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ladybug
05-24-2007, 06:03 PM
Hi, everyone.

OK, so I've asked my doc and they don't seem to beleive that my HR gets this high with exercise, so I'm going to ask on here for experiences with this....

My resting HR from the moment I set foot on the treadmill is about 120. (Generally its about 100 when I'm just laying around)... When I run for awhile, it shoots up to about 180 and sometimes a couple beats higher. I don't actually FEEL that overexerted! I feel pretty darn good. And, if I slow my run (and my HR shoots a little lower), I don't feel as energized and good after my run. SOOOO... what is the deal?!? I am almost 30, so my MAXIMUM HR should be around 190, and that's the absolute max. However, at just a job basically, it shoots up to 180! Its crazy! And, I've been doing the same run now for over 1 1/2 years and NO MATTER WHAT it always shoots up that high... So, any ideas why this is? Is it dangerous? OR, is it relative to the fact that I start with a higher resting heart rate to begin with, so naturally, my HR would go up higher?

For example, my DH has a resting HR of around 70... His HR gets to the highest 150-160. So, when you add 20-30 beats to my resting, wouldn't it be natural to add 20-30 beats to my max?? I'm confused.

I don't want to be damaging my heart or risking a heart attack, but at the same time, anything slower than what I'm running doesn't seem to give me that "jolt" and I don't feel like I'm really getting good cardio.

... Anyone else have their HR shoot up higher than it really should? My docs seem to think the treadmill is maybe not counting correctly, but I get this count myself and with my pulse ox on too!

Thanks,

ladybug
05-24-2007, 06:03 PM
Hi, everyone.

OK, so I've asked my doc and they don't seem to beleive that my HR gets this high with exercise, so I'm going to ask on here for experiences with this....

My resting HR from the moment I set foot on the treadmill is about 120. (Generally its about 100 when I'm just laying around)... When I run for awhile, it shoots up to about 180 and sometimes a couple beats higher. I don't actually FEEL that overexerted! I feel pretty darn good. And, if I slow my run (and my HR shoots a little lower), I don't feel as energized and good after my run. SOOOO... what is the deal?!? I am almost 30, so my MAXIMUM HR should be around 190, and that's the absolute max. However, at just a job basically, it shoots up to 180! Its crazy! And, I've been doing the same run now for over 1 1/2 years and NO MATTER WHAT it always shoots up that high... So, any ideas why this is? Is it dangerous? OR, is it relative to the fact that I start with a higher resting heart rate to begin with, so naturally, my HR would go up higher?

For example, my DH has a resting HR of around 70... His HR gets to the highest 150-160. So, when you add 20-30 beats to my resting, wouldn't it be natural to add 20-30 beats to my max?? I'm confused.

I don't want to be damaging my heart or risking a heart attack, but at the same time, anything slower than what I'm running doesn't seem to give me that "jolt" and I don't feel like I'm really getting good cardio.

... Anyone else have their HR shoot up higher than it really should? My docs seem to think the treadmill is maybe not counting correctly, but I get this count myself and with my pulse ox on too!

Thanks,

ladybug
05-24-2007, 06:03 PM
Hi, everyone.

OK, so I've asked my doc and they don't seem to beleive that my HR gets this high with exercise, so I'm going to ask on here for experiences with this....

My resting HR from the moment I set foot on the treadmill is about 120. (Generally its about 100 when I'm just laying around)... When I run for awhile, it shoots up to about 180 and sometimes a couple beats higher. I don't actually FEEL that overexerted! I feel pretty darn good. And, if I slow my run (and my HR shoots a little lower), I don't feel as energized and good after my run. SOOOO... what is the deal?!? I am almost 30, so my MAXIMUM HR should be around 190, and that's the absolute max. However, at just a job basically, it shoots up to 180! Its crazy! And, I've been doing the same run now for over 1 1/2 years and NO MATTER WHAT it always shoots up that high... So, any ideas why this is? Is it dangerous? OR, is it relative to the fact that I start with a higher resting heart rate to begin with, so naturally, my HR would go up higher?

For example, my DH has a resting HR of around 70... His HR gets to the highest 150-160. So, when you add 20-30 beats to my resting, wouldn't it be natural to add 20-30 beats to my max?? I'm confused.

I don't want to be damaging my heart or risking a heart attack, but at the same time, anything slower than what I'm running doesn't seem to give me that "jolt" and I don't feel like I'm really getting good cardio.

... Anyone else have their HR shoot up higher than it really should? My docs seem to think the treadmill is maybe not counting correctly, but I get this count myself and with my pulse ox on too!

Thanks,

littletally
05-24-2007, 07:31 PM
I actually have a similar problem. My heart rate doesn't go quite that high but it does get between 160 and 170. And I wonder if I'm going to explode because of it. Like you I feel fine but I get a little worried when it gets that high. Do you think it could be the albuterol or something like that? The only thing with that is I excersize in the afternoon and the albuterol is well out of my body by that time from morning treatments. Maybe it's our age. I'm 27 (soon to be 28 in September). I should ask my doc about it and see what they say. I have an appt next Wednesday and I'll see if they come up with a different answer. So I'll be talking to you soon!

Nikki
27/f/cf

littletally
05-24-2007, 07:31 PM
I actually have a similar problem. My heart rate doesn't go quite that high but it does get between 160 and 170. And I wonder if I'm going to explode because of it. Like you I feel fine but I get a little worried when it gets that high. Do you think it could be the albuterol or something like that? The only thing with that is I excersize in the afternoon and the albuterol is well out of my body by that time from morning treatments. Maybe it's our age. I'm 27 (soon to be 28 in September). I should ask my doc about it and see what they say. I have an appt next Wednesday and I'll see if they come up with a different answer. So I'll be talking to you soon!

Nikki
27/f/cf

littletally
05-24-2007, 07:31 PM
I actually have a similar problem. My heart rate doesn't go quite that high but it does get between 160 and 170. And I wonder if I'm going to explode because of it. Like you I feel fine but I get a little worried when it gets that high. Do you think it could be the albuterol or something like that? The only thing with that is I excersize in the afternoon and the albuterol is well out of my body by that time from morning treatments. Maybe it's our age. I'm 27 (soon to be 28 in September). I should ask my doc about it and see what they say. I have an appt next Wednesday and I'll see if they come up with a different answer. So I'll be talking to you soon!

Nikki
27/f/cf

cdale613
05-24-2007, 07:43 PM
Here is one source of general information about heart rates:
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Heart_rate">http://en.wikipedia.org/wiki/Heart_rate</a>

Resting and Max. heart rates vary greatly from person to person, but here are mine (using a polar heart rate monitor):


Resting heart rate - taken first thing in the morning before getting out of bed: 48

"Sitting" heart rate - sitting here at my desk: 67

Max heart rate - I tested it myself in mid-exercise a couple weeks ago: 200


Chris

27 m w/CF

cdale613
05-24-2007, 07:43 PM
Here is one source of general information about heart rates:
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Heart_rate">http://en.wikipedia.org/wiki/Heart_rate</a>

Resting and Max. heart rates vary greatly from person to person, but here are mine (using a polar heart rate monitor):


Resting heart rate - taken first thing in the morning before getting out of bed: 48

"Sitting" heart rate - sitting here at my desk: 67

Max heart rate - I tested it myself in mid-exercise a couple weeks ago: 200


Chris

27 m w/CF

cdale613
05-24-2007, 07:43 PM
Here is one source of general information about heart rates:
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Heart_rate">http://en.wikipedia.org/wiki/Heart_rate</a>

Resting and Max. heart rates vary greatly from person to person, but here are mine (using a polar heart rate monitor):


Resting heart rate - taken first thing in the morning before getting out of bed: 48

"Sitting" heart rate - sitting here at my desk: 67

Max heart rate - I tested it myself in mid-exercise a couple weeks ago: 200


Chris

27 m w/CF

blondelawyer
05-24-2007, 09:18 PM
I agree with Chris. Heart rates can vary greatly from person to person. The age based test is NOT very accurate. Some heart rate monitors can predict your HRmax or you can have a medical professional perform a test to determine your true max. For most people, getting that exact about the HRmax is not necessary.

blondelawyer
05-24-2007, 09:18 PM
I agree with Chris. Heart rates can vary greatly from person to person. The age based test is NOT very accurate. Some heart rate monitors can predict your HRmax or you can have a medical professional perform a test to determine your true max. For most people, getting that exact about the HRmax is not necessary.

blondelawyer
05-24-2007, 09:18 PM
I agree with Chris. Heart rates can vary greatly from person to person. The age based test is NOT very accurate. Some heart rate monitors can predict your HRmax or you can have a medical professional perform a test to determine your true max. For most people, getting that exact about the HRmax is not necessary.

cdale613
05-24-2007, 09:25 PM
Hi Sonia,

Re-reading your original post, I am curious... do you know what your o2 sats are doing while you are exercising? If they are dropping a lot, and your heart rate is shooting up, and unable to keep your o2 levels high, then I think that would be a cause for concern... more than your heart rate alone.

I don't know very much about the o2 saturation stuff, and what levels would be of concern, etc., but it might be something more to talk to your doc about.

Chris

cdale613
05-24-2007, 09:25 PM
Hi Sonia,

Re-reading your original post, I am curious... do you know what your o2 sats are doing while you are exercising? If they are dropping a lot, and your heart rate is shooting up, and unable to keep your o2 levels high, then I think that would be a cause for concern... more than your heart rate alone.

I don't know very much about the o2 saturation stuff, and what levels would be of concern, etc., but it might be something more to talk to your doc about.

Chris

cdale613
05-24-2007, 09:25 PM
Hi Sonia,

Re-reading your original post, I am curious... do you know what your o2 sats are doing while you are exercising? If they are dropping a lot, and your heart rate is shooting up, and unable to keep your o2 levels high, then I think that would be a cause for concern... more than your heart rate alone.

I don't know very much about the o2 saturation stuff, and what levels would be of concern, etc., but it might be something more to talk to your doc about.

Chris

Uli
05-24-2007, 10:09 PM
Hi Sonia,

I would ask your doc to test it, so they can also test the O2!

Uli,44,Germany

Uli
05-24-2007, 10:09 PM
Hi Sonia,

I would ask your doc to test it, so they can also test the O2!

Uli,44,Germany

Uli
05-24-2007, 10:09 PM
Hi Sonia,

I would ask your doc to test it, so they can also test the O2!

Uli,44,Germany

ladybug
05-25-2007, 01:11 AM
Thanks for the great responses! I just mostly became worried cause I was at a health fair the other day and told the lady about my HR and she said that is how people go into cardiac arrest and why most heart attacks happen at the gym! So, that really freaked me out.

I've tried to check my O2 while running, but with a portable pulse ox, it has always given me "error" readings since I'm not keeping my hand steady enough for a good reading. I've not had this test done at my doc cause I live 400 miles from my doc and usually try to get every possible test when I'm there every 4 months and running isn't usually too attractive after a morning of tests. I also usually run at elevation of 2500 and my clinic is at 5000 ft. Plus, I always run late in the afternoon, whereas any test I'd do at clinic would be VERY close to when I took my abluterol, and we all know what that means! LOL

.... So, its something I will bring up to them to test it while I run for 20 minutes, but with all the variables, I don't know how accurate THEIR test would be. Plus, when they've tested my o2 in the past when I've been inpatient on a treadmill, they've also just used a portable pulse ox... Are those accurate (or even possible) when you're swinging your hands/arms??

Thanks!!!

ladybug
05-25-2007, 01:11 AM
Thanks for the great responses! I just mostly became worried cause I was at a health fair the other day and told the lady about my HR and she said that is how people go into cardiac arrest and why most heart attacks happen at the gym! So, that really freaked me out.

I've tried to check my O2 while running, but with a portable pulse ox, it has always given me "error" readings since I'm not keeping my hand steady enough for a good reading. I've not had this test done at my doc cause I live 400 miles from my doc and usually try to get every possible test when I'm there every 4 months and running isn't usually too attractive after a morning of tests. I also usually run at elevation of 2500 and my clinic is at 5000 ft. Plus, I always run late in the afternoon, whereas any test I'd do at clinic would be VERY close to when I took my abluterol, and we all know what that means! LOL

.... So, its something I will bring up to them to test it while I run for 20 minutes, but with all the variables, I don't know how accurate THEIR test would be. Plus, when they've tested my o2 in the past when I've been inpatient on a treadmill, they've also just used a portable pulse ox... Are those accurate (or even possible) when you're swinging your hands/arms??

Thanks!!!

ladybug
05-25-2007, 01:11 AM
Thanks for the great responses! I just mostly became worried cause I was at a health fair the other day and told the lady about my HR and she said that is how people go into cardiac arrest and why most heart attacks happen at the gym! So, that really freaked me out.

I've tried to check my O2 while running, but with a portable pulse ox, it has always given me "error" readings since I'm not keeping my hand steady enough for a good reading. I've not had this test done at my doc cause I live 400 miles from my doc and usually try to get every possible test when I'm there every 4 months and running isn't usually too attractive after a morning of tests. I also usually run at elevation of 2500 and my clinic is at 5000 ft. Plus, I always run late in the afternoon, whereas any test I'd do at clinic would be VERY close to when I took my abluterol, and we all know what that means! LOL

.... So, its something I will bring up to them to test it while I run for 20 minutes, but with all the variables, I don't know how accurate THEIR test would be. Plus, when they've tested my o2 in the past when I've been inpatient on a treadmill, they've also just used a portable pulse ox... Are those accurate (or even possible) when you're swinging your hands/arms??

Thanks!!!

kybert
05-25-2007, 01:28 AM
i understand your worry sonia. my heart rate is the same as yours. 100 to 120 resting, around 180 exercising. my resting heart rate bothers me more. i know its not supposed to be that high.

kybert
05-25-2007, 01:28 AM
i understand your worry sonia. my heart rate is the same as yours. 100 to 120 resting, around 180 exercising. my resting heart rate bothers me more. i know its not supposed to be that high.

kybert
05-25-2007, 01:28 AM
i understand your worry sonia. my heart rate is the same as yours. 100 to 120 resting, around 180 exercising. my resting heart rate bothers me more. i know its not supposed to be that high.

Jade
05-25-2007, 02:26 AM
I went to the ER in january and my heart rate was insane. I'm surprised my heart didn't jump out of my chest and go running across the floor like that scene in the first alien movie. My HR has always been a little high though.

Jade
05-25-2007, 02:26 AM
I went to the ER in january and my heart rate was insane. I'm surprised my heart didn't jump out of my chest and go running across the floor like that scene in the first alien movie. My HR has always been a little high though.

Jade
05-25-2007, 02:26 AM
I went to the ER in january and my heart rate was insane. I'm surprised my heart didn't jump out of my chest and go running across the floor like that scene in the first alien movie. My HR has always been a little high though.

mom2lillian
05-25-2007, 07:47 AM
I also have issues with this.

WHen I used to run, also before my dx I was taking an aerobics class for college and they taught us to do resting HR then we had to bring that in and then do HR readings during class manually and the instructor almost croaked after we ran a mile and I did mine.

I also feel good when my active HR is 'higher' than it should be. My resting HR has decreased to the 60's now that I am more active but when excercising I let it get to 170 which is hgiher than I am 'supposed' to per what you read etc, I try not to get it above 165 as I am worried about enlarging my heart.

All the stuff I read if I keep my HR there I dont feel I am getting a tru workout and I have never known if I am a glutton for punishment or if it is due to the lungs? I have good 02 sats even when sick so I am not worried about that part I also dont get any signs of o2 deprivation.

I think a HR monitor by polar is a wise investment for any of us. I am signed up for a few personal training sessions soon and I will ask about this.

mom2lillian
05-25-2007, 07:47 AM
I also have issues with this.

WHen I used to run, also before my dx I was taking an aerobics class for college and they taught us to do resting HR then we had to bring that in and then do HR readings during class manually and the instructor almost croaked after we ran a mile and I did mine.

I also feel good when my active HR is 'higher' than it should be. My resting HR has decreased to the 60's now that I am more active but when excercising I let it get to 170 which is hgiher than I am 'supposed' to per what you read etc, I try not to get it above 165 as I am worried about enlarging my heart.

All the stuff I read if I keep my HR there I dont feel I am getting a tru workout and I have never known if I am a glutton for punishment or if it is due to the lungs? I have good 02 sats even when sick so I am not worried about that part I also dont get any signs of o2 deprivation.

I think a HR monitor by polar is a wise investment for any of us. I am signed up for a few personal training sessions soon and I will ask about this.

mom2lillian
05-25-2007, 07:47 AM
I also have issues with this.

WHen I used to run, also before my dx I was taking an aerobics class for college and they taught us to do resting HR then we had to bring that in and then do HR readings during class manually and the instructor almost croaked after we ran a mile and I did mine.

I also feel good when my active HR is 'higher' than it should be. My resting HR has decreased to the 60's now that I am more active but when excercising I let it get to 170 which is hgiher than I am 'supposed' to per what you read etc, I try not to get it above 165 as I am worried about enlarging my heart.

All the stuff I read if I keep my HR there I dont feel I am getting a tru workout and I have never known if I am a glutton for punishment or if it is due to the lungs? I have good 02 sats even when sick so I am not worried about that part I also dont get any signs of o2 deprivation.

I think a HR monitor by polar is a wise investment for any of us. I am signed up for a few personal training sessions soon and I will ask about this.

ladybug
05-26-2007, 07:51 PM
Hi, everyone... Thanks again for the input. Seems we all have a bit of an issue with this...

Nicole,

How were you able to get your resting HR so low? I literally have been running 3-4 times a week for almost 2 years and my resting nor my max HR have come down a single beat! It freaks me out, cause I know as you become more active this is something that SHOULD happen. Urgh.... Just wondering how long you had to be active before your resting HR went done like that? I would think 2 years would be sufficient to start seeing a lower resting HR, no?

Also, does albuterol factor into this, even if you've taken in several hours before activity? I suppose taking it 2X a day every single day, perhaps I still have the side effects of it at all times of the day?? I wonder if a high max HR due to med side effects is as bad as just a high max HR? Urgh.

Also, does the Polar pulse ox take readings when you're flailing your arms/hands around? I would think you'd have to be fairly stable to get an accurate reading, no? Plus, my treadmill at the gym has a polar HR built in and it specifically says NOT to take HR while running (for safety and accuracy).

Thanks again, guys. Sorry to be so inquisitive about it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know I go on and on sometimes! LOL

ladybug
05-26-2007, 07:51 PM
Hi, everyone... Thanks again for the input. Seems we all have a bit of an issue with this...

Nicole,

How were you able to get your resting HR so low? I literally have been running 3-4 times a week for almost 2 years and my resting nor my max HR have come down a single beat! It freaks me out, cause I know as you become more active this is something that SHOULD happen. Urgh.... Just wondering how long you had to be active before your resting HR went done like that? I would think 2 years would be sufficient to start seeing a lower resting HR, no?

Also, does albuterol factor into this, even if you've taken in several hours before activity? I suppose taking it 2X a day every single day, perhaps I still have the side effects of it at all times of the day?? I wonder if a high max HR due to med side effects is as bad as just a high max HR? Urgh.

Also, does the Polar pulse ox take readings when you're flailing your arms/hands around? I would think you'd have to be fairly stable to get an accurate reading, no? Plus, my treadmill at the gym has a polar HR built in and it specifically says NOT to take HR while running (for safety and accuracy).

Thanks again, guys. Sorry to be so inquisitive about it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know I go on and on sometimes! LOL

ladybug
05-26-2007, 07:51 PM
Hi, everyone... Thanks again for the input. Seems we all have a bit of an issue with this...

Nicole,

How were you able to get your resting HR so low? I literally have been running 3-4 times a week for almost 2 years and my resting nor my max HR have come down a single beat! It freaks me out, cause I know as you become more active this is something that SHOULD happen. Urgh.... Just wondering how long you had to be active before your resting HR went done like that? I would think 2 years would be sufficient to start seeing a lower resting HR, no?

Also, does albuterol factor into this, even if you've taken in several hours before activity? I suppose taking it 2X a day every single day, perhaps I still have the side effects of it at all times of the day?? I wonder if a high max HR due to med side effects is as bad as just a high max HR? Urgh.

Also, does the Polar pulse ox take readings when you're flailing your arms/hands around? I would think you'd have to be fairly stable to get an accurate reading, no? Plus, my treadmill at the gym has a polar HR built in and it specifically says NOT to take HR while running (for safety and accuracy).

Thanks again, guys. Sorry to be so inquisitive about it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know I go on and on sometimes! LOL

cdale613
05-27-2007, 12:05 AM
Hi Sonia,

Some people do respond physiologically to exercise more than others. Not everyone's heart rate drops as much.

Its very relative - if you were already in good aerobic shape when you started tracking your heart rate during your workouts, you wouldn't notice a drop in heart rate. In your case, one could also presume that there are other factors keeping your resting heart rate relatively high (lower resting O2 saturation for example). Also, as you mentioned, an increased heart rate is a potential side effect of albuterol.

In training, max. heart rate should be regarded as a constant. It will generally fall with age, but isn't really impacted by exercise. What is impacted is your anaerobic threshold. People can only sustain brief periods of activity above their anaerobic threshold. For most people, this anaerobic phase starts at 80-90% of their max. heart rate. It is possible through specified training that target different heart rate zones to push your anaerobic threshold up, sustaining activity at higher heart rates for longer times.

When you hear things like don't train above a certain heart rate level, its because they are assuming you have crossed your aerobic threshold, and are training anareobically, which does not do you any good if your goal is to train your aerobic "system".

If you're really interested in it, there are a lot of exercise physiology books out there that talk about training with heart rate. I can't recommend any in particular.

Your gym is right... don't try to hold the bar on the treadmill while running very fast... its definitely akward, and they don't want you to fall. However, you should be able to get a decent reading if you take it right after running and then held on to it as you walked. The product I was referring to before was the chest strap/ wrist watch kind.

Hope this was somewhat helpful, personally I find it pretty fascinating!!

Chris

26 m w/CF

cdale613
05-27-2007, 12:05 AM
Hi Sonia,

Some people do respond physiologically to exercise more than others. Not everyone's heart rate drops as much.

Its very relative - if you were already in good aerobic shape when you started tracking your heart rate during your workouts, you wouldn't notice a drop in heart rate. In your case, one could also presume that there are other factors keeping your resting heart rate relatively high (lower resting O2 saturation for example). Also, as you mentioned, an increased heart rate is a potential side effect of albuterol.

In training, max. heart rate should be regarded as a constant. It will generally fall with age, but isn't really impacted by exercise. What is impacted is your anaerobic threshold. People can only sustain brief periods of activity above their anaerobic threshold. For most people, this anaerobic phase starts at 80-90% of their max. heart rate. It is possible through specified training that target different heart rate zones to push your anaerobic threshold up, sustaining activity at higher heart rates for longer times.

When you hear things like don't train above a certain heart rate level, its because they are assuming you have crossed your aerobic threshold, and are training anareobically, which does not do you any good if your goal is to train your aerobic "system".

If you're really interested in it, there are a lot of exercise physiology books out there that talk about training with heart rate. I can't recommend any in particular.

Your gym is right... don't try to hold the bar on the treadmill while running very fast... its definitely akward, and they don't want you to fall. However, you should be able to get a decent reading if you take it right after running and then held on to it as you walked. The product I was referring to before was the chest strap/ wrist watch kind.

Hope this was somewhat helpful, personally I find it pretty fascinating!!

Chris

26 m w/CF

cdale613
05-27-2007, 12:05 AM
Hi Sonia,

Some people do respond physiologically to exercise more than others. Not everyone's heart rate drops as much.

Its very relative - if you were already in good aerobic shape when you started tracking your heart rate during your workouts, you wouldn't notice a drop in heart rate. In your case, one could also presume that there are other factors keeping your resting heart rate relatively high (lower resting O2 saturation for example). Also, as you mentioned, an increased heart rate is a potential side effect of albuterol.

In training, max. heart rate should be regarded as a constant. It will generally fall with age, but isn't really impacted by exercise. What is impacted is your anaerobic threshold. People can only sustain brief periods of activity above their anaerobic threshold. For most people, this anaerobic phase starts at 80-90% of their max. heart rate. It is possible through specified training that target different heart rate zones to push your anaerobic threshold up, sustaining activity at higher heart rates for longer times.

When you hear things like don't train above a certain heart rate level, its because they are assuming you have crossed your aerobic threshold, and are training anareobically, which does not do you any good if your goal is to train your aerobic "system".

If you're really interested in it, there are a lot of exercise physiology books out there that talk about training with heart rate. I can't recommend any in particular.

Your gym is right... don't try to hold the bar on the treadmill while running very fast... its definitely akward, and they don't want you to fall. However, you should be able to get a decent reading if you take it right after running and then held on to it as you walked. The product I was referring to before was the chest strap/ wrist watch kind.

Hope this was somewhat helpful, personally I find it pretty fascinating!!

Chris

26 m w/CF

mom2lillian
05-27-2007, 01:45 PM
Sonia-MY resting HR goes down very quickly witin a few months of my being active but also I do not take albuterol as it makes my HR go crazy and I get jittery and it drives me crazy. I take xopenex you might try it instead for a month though I do know it is more expensive so you woudl have to weight that out depeding on your ocverage. You should take resting HR before you get out of bed and see what it is as albuterol will have worn off at that point. ALso I have 97% lung functions and my O2 sats are always perfect I think everyoen is different and you just focus on getting yours as best as you can.

If you buy a polar monitor it will automatically link to the gym equipment and show on screen. It is a strap you wear around your chest and then you have a watch and you can look at watch and it will keep track time in zone out aone etc but the HR on the watch will also be on equipments screen so yes it shows up at all times and is even able to be used in pool most of the time. They are well worth investment IMO.

Chris-thanks for the notes, it is all very interesting to me I have been looking up info on HR training to imrpove cardio fitness etc and I am toying with it a bit but want to read some more and then really try it.

mom2lillian
05-27-2007, 01:45 PM
Sonia-MY resting HR goes down very quickly witin a few months of my being active but also I do not take albuterol as it makes my HR go crazy and I get jittery and it drives me crazy. I take xopenex you might try it instead for a month though I do know it is more expensive so you woudl have to weight that out depeding on your ocverage. You should take resting HR before you get out of bed and see what it is as albuterol will have worn off at that point. ALso I have 97% lung functions and my O2 sats are always perfect I think everyoen is different and you just focus on getting yours as best as you can.

If you buy a polar monitor it will automatically link to the gym equipment and show on screen. It is a strap you wear around your chest and then you have a watch and you can look at watch and it will keep track time in zone out aone etc but the HR on the watch will also be on equipments screen so yes it shows up at all times and is even able to be used in pool most of the time. They are well worth investment IMO.

Chris-thanks for the notes, it is all very interesting to me I have been looking up info on HR training to imrpove cardio fitness etc and I am toying with it a bit but want to read some more and then really try it.

mom2lillian
05-27-2007, 01:45 PM
Sonia-MY resting HR goes down very quickly witin a few months of my being active but also I do not take albuterol as it makes my HR go crazy and I get jittery and it drives me crazy. I take xopenex you might try it instead for a month though I do know it is more expensive so you woudl have to weight that out depeding on your ocverage. You should take resting HR before you get out of bed and see what it is as albuterol will have worn off at that point. ALso I have 97% lung functions and my O2 sats are always perfect I think everyoen is different and you just focus on getting yours as best as you can.

If you buy a polar monitor it will automatically link to the gym equipment and show on screen. It is a strap you wear around your chest and then you have a watch and you can look at watch and it will keep track time in zone out aone etc but the HR on the watch will also be on equipments screen so yes it shows up at all times and is even able to be used in pool most of the time. They are well worth investment IMO.

Chris-thanks for the notes, it is all very interesting to me I have been looking up info on HR training to imrpove cardio fitness etc and I am toying with it a bit but want to read some more and then really try it.

ladybug
05-27-2007, 04:05 PM
Thanks, Chris and Nicole!

Chris:

Great info! My resting O2 is around 96 and has been for years. I think with just walking briskly it can get to around 93, but again, I haven't checked it running. I don't have the "symptoms" of it being low however, as I don't feel light headed, out of breath and can usually chat with people immediately after I stop running (and qucik answers as I am running).

Nicole:

Yes, I've tried xopenex. It didn't work as well for me. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I really wish it had though, cause albuterol has maken me jittery and giving me a racing pulse for years. Urgh.

Anyway, thanks again everyone. Its good to get some good information that doesn't always follow what I learned in high school gym class... Its also good to know others have this issue as well and aren't too worried about it.

Thanks,

ladybug
05-27-2007, 04:05 PM
Thanks, Chris and Nicole!

Chris:

Great info! My resting O2 is around 96 and has been for years. I think with just walking briskly it can get to around 93, but again, I haven't checked it running. I don't have the "symptoms" of it being low however, as I don't feel light headed, out of breath and can usually chat with people immediately after I stop running (and qucik answers as I am running).

Nicole:

Yes, I've tried xopenex. It didn't work as well for me. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I really wish it had though, cause albuterol has maken me jittery and giving me a racing pulse for years. Urgh.

Anyway, thanks again everyone. Its good to get some good information that doesn't always follow what I learned in high school gym class... Its also good to know others have this issue as well and aren't too worried about it.

Thanks,

ladybug
05-27-2007, 04:05 PM
Thanks, Chris and Nicole!

Chris:

Great info! My resting O2 is around 96 and has been for years. I think with just walking briskly it can get to around 93, but again, I haven't checked it running. I don't have the "symptoms" of it being low however, as I don't feel light headed, out of breath and can usually chat with people immediately after I stop running (and qucik answers as I am running).

Nicole:

Yes, I've tried xopenex. It didn't work as well for me. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I really wish it had though, cause albuterol has maken me jittery and giving me a racing pulse for years. Urgh.

Anyway, thanks again everyone. Its good to get some good information that doesn't always follow what I learned in high school gym class... Its also good to know others have this issue as well and aren't too worried about it.

Thanks,

ladybug
05-28-2007, 06:05 PM
Hi,

OK, so I took my pulse ox to the gym yesterday and amazingly, for the first time, it seemed to give me a couple of readings while I was running! So, my HR stays around 175 when running about 10-20 minutes. HOWEVER, my O2 sats drop from 95-96 when walking to about 85 when running... Its weird. I don't FEEL that low... I could answer people and read closed captioning on TV and just don't feel bad, like I have before when at rest my O2 has dropped to 85 at high elevations and stuff. SO.... what do you make of this? Should I worry? I know some will suggest oxygen with exercise, but the fact is, within ONE minute of stopping my run and briskly walking uphill my sats went back up to 95! Within a minute! It was crazy!

.... So, is it natural for everyone's sats to drop with heavy aerobic activity?? If its that low, shouldn't I feel it and feel uncomfortable, short of breath, hard to talk, lightheaded, etc.?? I will, of course, ask the docs this and will slow my run (its already super slow) next time and try to get a reading when I'm not pushing myself quite as hard. But, I'm wondering everyone else's experience with this. I've been running for a couple of years now and always feel this same way when I run, so I doubt they've gotten better or worse over this past year, but can't be sure.

Anyway, what do ya'll think??

Thanks,

ladybug
05-28-2007, 06:05 PM
Hi,

OK, so I took my pulse ox to the gym yesterday and amazingly, for the first time, it seemed to give me a couple of readings while I was running! So, my HR stays around 175 when running about 10-20 minutes. HOWEVER, my O2 sats drop from 95-96 when walking to about 85 when running... Its weird. I don't FEEL that low... I could answer people and read closed captioning on TV and just don't feel bad, like I have before when at rest my O2 has dropped to 85 at high elevations and stuff. SO.... what do you make of this? Should I worry? I know some will suggest oxygen with exercise, but the fact is, within ONE minute of stopping my run and briskly walking uphill my sats went back up to 95! Within a minute! It was crazy!

.... So, is it natural for everyone's sats to drop with heavy aerobic activity?? If its that low, shouldn't I feel it and feel uncomfortable, short of breath, hard to talk, lightheaded, etc.?? I will, of course, ask the docs this and will slow my run (its already super slow) next time and try to get a reading when I'm not pushing myself quite as hard. But, I'm wondering everyone else's experience with this. I've been running for a couple of years now and always feel this same way when I run, so I doubt they've gotten better or worse over this past year, but can't be sure.

Anyway, what do ya'll think??

Thanks,

ladybug
05-28-2007, 06:05 PM
Hi,

OK, so I took my pulse ox to the gym yesterday and amazingly, for the first time, it seemed to give me a couple of readings while I was running! So, my HR stays around 175 when running about 10-20 minutes. HOWEVER, my O2 sats drop from 95-96 when walking to about 85 when running... Its weird. I don't FEEL that low... I could answer people and read closed captioning on TV and just don't feel bad, like I have before when at rest my O2 has dropped to 85 at high elevations and stuff. SO.... what do you make of this? Should I worry? I know some will suggest oxygen with exercise, but the fact is, within ONE minute of stopping my run and briskly walking uphill my sats went back up to 95! Within a minute! It was crazy!

.... So, is it natural for everyone's sats to drop with heavy aerobic activity?? If its that low, shouldn't I feel it and feel uncomfortable, short of breath, hard to talk, lightheaded, etc.?? I will, of course, ask the docs this and will slow my run (its already super slow) next time and try to get a reading when I'm not pushing myself quite as hard. But, I'm wondering everyone else's experience with this. I've been running for a couple of years now and always feel this same way when I run, so I doubt they've gotten better or worse over this past year, but can't be sure.

Anyway, what do ya'll think??

Thanks,

NoExcuses
05-28-2007, 07:38 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>



Anyway, what do ya'll think??


</end quote></div>


You need O2 while you exercise. I'm glad you took everyone's advice and tested yourself.

Everyone's O2 sats drop while exercising...it's just a matter of how much. CFers - well, many people desat.

But your body will be grateful when you finally give it some O2 while you exercise. Your poor heart will finally not have to work so darn hard.

NoExcuses
05-28-2007, 07:38 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>



Anyway, what do ya'll think??


</end quote></div>


You need O2 while you exercise. I'm glad you took everyone's advice and tested yourself.

Everyone's O2 sats drop while exercising...it's just a matter of how much. CFers - well, many people desat.

But your body will be grateful when you finally give it some O2 while you exercise. Your poor heart will finally not have to work so darn hard.

NoExcuses
05-28-2007, 07:38 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>



Anyway, what do ya'll think??


</end quote></div>


You need O2 while you exercise. I'm glad you took everyone's advice and tested yourself.

Everyone's O2 sats drop while exercising...it's just a matter of how much. CFers - well, many people desat.

But your body will be grateful when you finally give it some O2 while you exercise. Your poor heart will finally not have to work so darn hard.

ladybug
05-28-2007, 10:45 PM
Thanks for the reply, Amy...

So, if I slow my run and my sats stay in the 90's... then I shouldn't need O2 correct? The issue here is that yes, 85 is low for a strenous aerobic activity, BUT they instantly go up when I'm walking even at an incline, even very briskly... so, I would need O2 for maybe 15-20 minute run and then my own O2 would kick in for after? Seems like the most natural thing would to be slow my run and see if my O2 does better on its own, no? Perhaps I'm just jacking my heart up too much with albuterol, running, heat (its 80 degrees in the gym right now), etc. and with a more appropriate speed my heart and lungs can keep up. No? Otherwise, I'll have O2 on for half of my workout when I'm at 97% sats on my own.

Yes, I'm trying to avoid O2 if possible (I don't workout at a rehab facility... I work out where there are bodybuilders and NO ONE wears O2... I garauntee that if I have to strap on O2 to run, I won't run nearly as often... I know its my own issues, but if it keeps me from the gym that is far more worrisome to me than low sats with a 20 minute run... Sorry, but that's how I feel... call me vain or stupid or whatever. Kudos to those on this site who do it and feel great for it, but I just can't get my mind around it yet. I'm not at that place. I'd feel differently I think if I actually FELT like I needed O2, but I don't at all! Yes, if I were short of breath and felt like crap when I ran, I'd gladly put it on, but I feel GREAT when I run... GREAT!)

I will have my DH wear the monitor tomorrow when he does his (gulp) 7 mile run on the treadmill and have him check his own O2 to see what he gets just to compare with a very very healthy male putting about as much exertion on his body (if there is any comparison... I'm not male and I'm not very very healthy... LOL). I am curious how low a non-CFer gets while doing a very strenuous aerobic activity.

Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.

ladybug
05-28-2007, 10:45 PM
Thanks for the reply, Amy...

So, if I slow my run and my sats stay in the 90's... then I shouldn't need O2 correct? The issue here is that yes, 85 is low for a strenous aerobic activity, BUT they instantly go up when I'm walking even at an incline, even very briskly... so, I would need O2 for maybe 15-20 minute run and then my own O2 would kick in for after? Seems like the most natural thing would to be slow my run and see if my O2 does better on its own, no? Perhaps I'm just jacking my heart up too much with albuterol, running, heat (its 80 degrees in the gym right now), etc. and with a more appropriate speed my heart and lungs can keep up. No? Otherwise, I'll have O2 on for half of my workout when I'm at 97% sats on my own.

Yes, I'm trying to avoid O2 if possible (I don't workout at a rehab facility... I work out where there are bodybuilders and NO ONE wears O2... I garauntee that if I have to strap on O2 to run, I won't run nearly as often... I know its my own issues, but if it keeps me from the gym that is far more worrisome to me than low sats with a 20 minute run... Sorry, but that's how I feel... call me vain or stupid or whatever. Kudos to those on this site who do it and feel great for it, but I just can't get my mind around it yet. I'm not at that place. I'd feel differently I think if I actually FELT like I needed O2, but I don't at all! Yes, if I were short of breath and felt like crap when I ran, I'd gladly put it on, but I feel GREAT when I run... GREAT!)

I will have my DH wear the monitor tomorrow when he does his (gulp) 7 mile run on the treadmill and have him check his own O2 to see what he gets just to compare with a very very healthy male putting about as much exertion on his body (if there is any comparison... I'm not male and I'm not very very healthy... LOL). I am curious how low a non-CFer gets while doing a very strenuous aerobic activity.

Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.

ladybug
05-28-2007, 10:45 PM
Thanks for the reply, Amy...

So, if I slow my run and my sats stay in the 90's... then I shouldn't need O2 correct? The issue here is that yes, 85 is low for a strenous aerobic activity, BUT they instantly go up when I'm walking even at an incline, even very briskly... so, I would need O2 for maybe 15-20 minute run and then my own O2 would kick in for after? Seems like the most natural thing would to be slow my run and see if my O2 does better on its own, no? Perhaps I'm just jacking my heart up too much with albuterol, running, heat (its 80 degrees in the gym right now), etc. and with a more appropriate speed my heart and lungs can keep up. No? Otherwise, I'll have O2 on for half of my workout when I'm at 97% sats on my own.

Yes, I'm trying to avoid O2 if possible (I don't workout at a rehab facility... I work out where there are bodybuilders and NO ONE wears O2... I garauntee that if I have to strap on O2 to run, I won't run nearly as often... I know its my own issues, but if it keeps me from the gym that is far more worrisome to me than low sats with a 20 minute run... Sorry, but that's how I feel... call me vain or stupid or whatever. Kudos to those on this site who do it and feel great for it, but I just can't get my mind around it yet. I'm not at that place. I'd feel differently I think if I actually FELT like I needed O2, but I don't at all! Yes, if I were short of breath and felt like crap when I ran, I'd gladly put it on, but I feel GREAT when I run... GREAT!)

I will have my DH wear the monitor tomorrow when he does his (gulp) 7 mile run on the treadmill and have him check his own O2 to see what he gets just to compare with a very very healthy male putting about as much exertion on his body (if there is any comparison... I'm not male and I'm not very very healthy... LOL). I am curious how low a non-CFer gets while doing a very strenuous aerobic activity.

Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.

NoExcuses
05-28-2007, 11:37 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.</end quote></div>


You shouldn't de-sat whether you're a CFer or a non-CFer. The de-sat number doesn't vary. <90% is considered hypoxia.

If you aren't interested in wearing O2, then you need to calm down the exercising to avoid hypoxia. It's as simple as that.

I know you're trying to come up with other ideas as to why you're de-satting. And some don't feel the effects of desaturation. So the fact that you're not "feeling it" doesn't take away from the facts. You could be causing yourself heart damage and if it goes too low, brain damage.

I have a pulse ox and i exercise very strenously for almost 30 minutes on my eliptical. My O2 never goes below 95%.

So two choices : 1. suck it up and get some O2 2. don't exercise to the point where you dip below 90%

Good luck. And congrats on exercising. <img src="">

NoExcuses
05-28-2007, 11:37 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.</end quote></div>


You shouldn't de-sat whether you're a CFer or a non-CFer. The de-sat number doesn't vary. <90% is considered hypoxia.

If you aren't interested in wearing O2, then you need to calm down the exercising to avoid hypoxia. It's as simple as that.

I know you're trying to come up with other ideas as to why you're de-satting. And some don't feel the effects of desaturation. So the fact that you're not "feeling it" doesn't take away from the facts. You could be causing yourself heart damage and if it goes too low, brain damage.

I have a pulse ox and i exercise very strenously for almost 30 minutes on my eliptical. My O2 never goes below 95%.

So two choices : 1. suck it up and get some O2 2. don't exercise to the point where you dip below 90%

Good luck. And congrats on exercising. <img src="">

NoExcuses
05-28-2007, 11:37 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>


Anyone else check a non-CFer or know of literature that shows how low is too low for O2 sats with exercise for a CFer or non-CFer.</end quote></div>


You shouldn't de-sat whether you're a CFer or a non-CFer. The de-sat number doesn't vary. <90% is considered hypoxia.

If you aren't interested in wearing O2, then you need to calm down the exercising to avoid hypoxia. It's as simple as that.

I know you're trying to come up with other ideas as to why you're de-satting. And some don't feel the effects of desaturation. So the fact that you're not "feeling it" doesn't take away from the facts. You could be causing yourself heart damage and if it goes too low, brain damage.

I have a pulse ox and i exercise very strenously for almost 30 minutes on my eliptical. My O2 never goes below 95%.

So two choices : 1. suck it up and get some O2 2. don't exercise to the point where you dip below 90%

Good luck. And congrats on exercising. <img src="">

kybert
05-29-2007, 03:38 AM
ditto to what amy said. id personally just back off with the fast running. by the sounds of things you dont really need o2, you just need to slow down. everyone has to slow down at some stage and pushing yourself too hard might be harmful. you arent going to miss out on anything by doing a slow run or even cutting out running altogether and replacing it with other exercises.

kybert
05-29-2007, 03:38 AM
ditto to what amy said. id personally just back off with the fast running. by the sounds of things you dont really need o2, you just need to slow down. everyone has to slow down at some stage and pushing yourself too hard might be harmful. you arent going to miss out on anything by doing a slow run or even cutting out running altogether and replacing it with other exercises.

kybert
05-29-2007, 03:38 AM
ditto to what amy said. id personally just back off with the fast running. by the sounds of things you dont really need o2, you just need to slow down. everyone has to slow down at some stage and pushing yourself too hard might be harmful. you arent going to miss out on anything by doing a slow run or even cutting out running altogether and replacing it with other exercises.

ladybug
05-29-2007, 04:21 AM
Thanks, Kylie and Amy...

I actually spoke to a nurse tonight regarding this. She works at a med/surg. floor and does a lot of O2 saturation tests on people recovery from surgery or other illnesses and works a lot with asthmatics. When talking to her I told her of my 84% O2 WHILE running. Immediately she told me that's "not abnormal" and that many of her asthmatic patients do dip that low if tested during exercise, even though they shoudln't be.... She says first of all to NOT take an O2 while running. Tests are not done while running or walking fast for that matter at her hospital on anyone. She said it is totally normal for someone's O2 to dip 10-12% with very hard exercise and she's not at all alarmed. If your O2 didn't dip and place some burden on your heart, aterties, lungs, etc. it wouldn't be considered aerobic exercise. That is exactly what SHOULD happen during exercise (although not all people dip that low depending on how hard they're working). Though 10% is about the lowest you want to drop, she said this is not enough to alarm her or the docs she works with.

She did say this: When they do saturation testing at their hospital, they walk a patient or have them do something strenuous and then IMMEDIATELY AFTER they stop walking/moving, etc., they take their O2. If it is low at THAT time, there is reason for concern. The idea is that your O2 level should pop right back up almost immediately after strenuous exercise. If it does that, she said they consider their patients in good shape. If it does not come back above 90 within 30 seconds to 1 minute tops, you have reason to worry.

She also mentioned regaring the HR (my original question on this thread... LOL) that really an increase of 60-75 beats with strenuous exercise is considered normal. She said since my resting HR is high and does go up about 60 beats, that is about as high as I'd want to let it get and make sure with my doc that it isn't too high, but she said the "rule of thumb" at the hospital is that 60-75 beats above your starting exercise HR is normal. Interesting.

She said that unless CF patients have different criteria to follow than the general public as far as how much to push their hearts/lungs (i.e. if we are told to do LESS to put less pressure on our hearts and lungs). she wouldn't worry about this with either the O2 OR the HR. I don't think we're supposed to push ourselve less because of having CF are we? I mean, is it more dangerous to us than someone else to really workout hard simply because we have CF? Are we more frail as a population with regard to exercise?

..... So... that is what she said. She has been a nurse on that floor for about 25 years now so I do trust her medical advice, however will still make sure with my CF doc.

I agree I should maybe cut back the run a bit, so will attempt to do that this week and see what happens. I know that if I go slower I won't feel as good after the run, cause whenever I slow down or walk briskly or do something liek that I just don't have that great feeling like I really "worked" myself. I'm sometimes barely sweating and don't cough at all when I don't give it a hard run. But, we'll see.

Thanks everyone for your honset answers. And, thanks Amy for appreciating what I'm trying to do here. LOL... I've always sung the praises of exercise on the boards and feel amazing when I do it and can even feel it after just ONE day of not doing it, so I know it has some pretty awesome benefits!!

ladybug
05-29-2007, 04:21 AM
Thanks, Kylie and Amy...

I actually spoke to a nurse tonight regarding this. She works at a med/surg. floor and does a lot of O2 saturation tests on people recovery from surgery or other illnesses and works a lot with asthmatics. When talking to her I told her of my 84% O2 WHILE running. Immediately she told me that's "not abnormal" and that many of her asthmatic patients do dip that low if tested during exercise, even though they shoudln't be.... She says first of all to NOT take an O2 while running. Tests are not done while running or walking fast for that matter at her hospital on anyone. She said it is totally normal for someone's O2 to dip 10-12% with very hard exercise and she's not at all alarmed. If your O2 didn't dip and place some burden on your heart, aterties, lungs, etc. it wouldn't be considered aerobic exercise. That is exactly what SHOULD happen during exercise (although not all people dip that low depending on how hard they're working). Though 10% is about the lowest you want to drop, she said this is not enough to alarm her or the docs she works with.

She did say this: When they do saturation testing at their hospital, they walk a patient or have them do something strenuous and then IMMEDIATELY AFTER they stop walking/moving, etc., they take their O2. If it is low at THAT time, there is reason for concern. The idea is that your O2 level should pop right back up almost immediately after strenuous exercise. If it does that, she said they consider their patients in good shape. If it does not come back above 90 within 30 seconds to 1 minute tops, you have reason to worry.

She also mentioned regaring the HR (my original question on this thread... LOL) that really an increase of 60-75 beats with strenuous exercise is considered normal. She said since my resting HR is high and does go up about 60 beats, that is about as high as I'd want to let it get and make sure with my doc that it isn't too high, but she said the "rule of thumb" at the hospital is that 60-75 beats above your starting exercise HR is normal. Interesting.

She said that unless CF patients have different criteria to follow than the general public as far as how much to push their hearts/lungs (i.e. if we are told to do LESS to put less pressure on our hearts and lungs). she wouldn't worry about this with either the O2 OR the HR. I don't think we're supposed to push ourselve less because of having CF are we? I mean, is it more dangerous to us than someone else to really workout hard simply because we have CF? Are we more frail as a population with regard to exercise?

..... So... that is what she said. She has been a nurse on that floor for about 25 years now so I do trust her medical advice, however will still make sure with my CF doc.

I agree I should maybe cut back the run a bit, so will attempt to do that this week and see what happens. I know that if I go slower I won't feel as good after the run, cause whenever I slow down or walk briskly or do something liek that I just don't have that great feeling like I really "worked" myself. I'm sometimes barely sweating and don't cough at all when I don't give it a hard run. But, we'll see.

Thanks everyone for your honset answers. And, thanks Amy for appreciating what I'm trying to do here. LOL... I've always sung the praises of exercise on the boards and feel amazing when I do it and can even feel it after just ONE day of not doing it, so I know it has some pretty awesome benefits!!

ladybug
05-29-2007, 04:21 AM
Thanks, Kylie and Amy...

I actually spoke to a nurse tonight regarding this. She works at a med/surg. floor and does a lot of O2 saturation tests on people recovery from surgery or other illnesses and works a lot with asthmatics. When talking to her I told her of my 84% O2 WHILE running. Immediately she told me that's "not abnormal" and that many of her asthmatic patients do dip that low if tested during exercise, even though they shoudln't be.... She says first of all to NOT take an O2 while running. Tests are not done while running or walking fast for that matter at her hospital on anyone. She said it is totally normal for someone's O2 to dip 10-12% with very hard exercise and she's not at all alarmed. If your O2 didn't dip and place some burden on your heart, aterties, lungs, etc. it wouldn't be considered aerobic exercise. That is exactly what SHOULD happen during exercise (although not all people dip that low depending on how hard they're working). Though 10% is about the lowest you want to drop, she said this is not enough to alarm her or the docs she works with.

She did say this: When they do saturation testing at their hospital, they walk a patient or have them do something strenuous and then IMMEDIATELY AFTER they stop walking/moving, etc., they take their O2. If it is low at THAT time, there is reason for concern. The idea is that your O2 level should pop right back up almost immediately after strenuous exercise. If it does that, she said they consider their patients in good shape. If it does not come back above 90 within 30 seconds to 1 minute tops, you have reason to worry.

She also mentioned regaring the HR (my original question on this thread... LOL) that really an increase of 60-75 beats with strenuous exercise is considered normal. She said since my resting HR is high and does go up about 60 beats, that is about as high as I'd want to let it get and make sure with my doc that it isn't too high, but she said the "rule of thumb" at the hospital is that 60-75 beats above your starting exercise HR is normal. Interesting.

She said that unless CF patients have different criteria to follow than the general public as far as how much to push their hearts/lungs (i.e. if we are told to do LESS to put less pressure on our hearts and lungs). she wouldn't worry about this with either the O2 OR the HR. I don't think we're supposed to push ourselve less because of having CF are we? I mean, is it more dangerous to us than someone else to really workout hard simply because we have CF? Are we more frail as a population with regard to exercise?

..... So... that is what she said. She has been a nurse on that floor for about 25 years now so I do trust her medical advice, however will still make sure with my CF doc.

I agree I should maybe cut back the run a bit, so will attempt to do that this week and see what happens. I know that if I go slower I won't feel as good after the run, cause whenever I slow down or walk briskly or do something liek that I just don't have that great feeling like I really "worked" myself. I'm sometimes barely sweating and don't cough at all when I don't give it a hard run. But, we'll see.

Thanks everyone for your honset answers. And, thanks Amy for appreciating what I'm trying to do here. LOL... I've always sung the praises of exercise on the boards and feel amazing when I do it and can even feel it after just ONE day of not doing it, so I know it has some pretty awesome benefits!!

mom2lillian
05-29-2007, 07:41 AM
Sonia-very intersting. Thanks for posting the answer you got. Let us know when you find out from your CF docs too ok?

I was goign to tell you I dont blame you for not putting on o2 I wouldnt either and maybe get a treadmill at home but sounds like you will be ok either way.

I will have to do checking into my own circumstance here because my HR gets way above 60-70 beats higher than resting it is fine according to the HR link that someone put on here. Might have to ask about it at my next appt but I woudl rather ask a fitness expert as many docs are not well versted in the excercise physiology.

I agree with you it just doesnt feel as good if your HR doesnt get up there into the cardio range and not just in the fat burning range or whatever however I definately dont want to be doing damage when I am trying to do something good for my body. I will be intereted to see what your hubbies o2 sats are at, ask him to do a full bore few minutes and see what it goes too also <img src="i/expressions/face-icon-small-smile.gif" border="0">--for us!

mom2lillian
05-29-2007, 07:41 AM
Sonia-very intersting. Thanks for posting the answer you got. Let us know when you find out from your CF docs too ok?

I was goign to tell you I dont blame you for not putting on o2 I wouldnt either and maybe get a treadmill at home but sounds like you will be ok either way.

I will have to do checking into my own circumstance here because my HR gets way above 60-70 beats higher than resting it is fine according to the HR link that someone put on here. Might have to ask about it at my next appt but I woudl rather ask a fitness expert as many docs are not well versted in the excercise physiology.

I agree with you it just doesnt feel as good if your HR doesnt get up there into the cardio range and not just in the fat burning range or whatever however I definately dont want to be doing damage when I am trying to do something good for my body. I will be intereted to see what your hubbies o2 sats are at, ask him to do a full bore few minutes and see what it goes too also <img src="i/expressions/face-icon-small-smile.gif" border="0">--for us!

mom2lillian
05-29-2007, 07:41 AM
Sonia-very intersting. Thanks for posting the answer you got. Let us know when you find out from your CF docs too ok?

I was goign to tell you I dont blame you for not putting on o2 I wouldnt either and maybe get a treadmill at home but sounds like you will be ok either way.

I will have to do checking into my own circumstance here because my HR gets way above 60-70 beats higher than resting it is fine according to the HR link that someone put on here. Might have to ask about it at my next appt but I woudl rather ask a fitness expert as many docs are not well versted in the excercise physiology.

I agree with you it just doesnt feel as good if your HR doesnt get up there into the cardio range and not just in the fat burning range or whatever however I definately dont want to be doing damage when I am trying to do something good for my body. I will be intereted to see what your hubbies o2 sats are at, ask him to do a full bore few minutes and see what it goes too also <img src="i/expressions/face-icon-small-smile.gif" border="0">--for us!

mom2lillian
05-29-2007, 07:58 AM
oh forgot to tell you what I logged on to say. I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

Though I woudl look more into this if it is true that might be a very hand tip for the typcial cf'er since you have to eat so much fatty food to start with, perhaps some straight complex carbs before workout woudl be good?

mom2lillian
05-29-2007, 07:58 AM
oh forgot to tell you what I logged on to say. I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

Though I woudl look more into this if it is true that might be a very hand tip for the typcial cf'er since you have to eat so much fatty food to start with, perhaps some straight complex carbs before workout woudl be good?

mom2lillian
05-29-2007, 07:58 AM
oh forgot to tell you what I logged on to say. I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

Though I woudl look more into this if it is true that might be a very hand tip for the typcial cf'er since you have to eat so much fatty food to start with, perhaps some straight complex carbs before workout woudl be good?

cdale613
05-29-2007, 04:11 PM
Hi Sonia,

85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

If you are really opposed to using O2 during your workouts, there are a few different things that might help you:

1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.


Chris

26 m w/CF

cdale613
05-29-2007, 04:11 PM
Hi Sonia,

85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

If you are really opposed to using O2 during your workouts, there are a few different things that might help you:

1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.


Chris

26 m w/CF

cdale613
05-29-2007, 04:11 PM
Hi Sonia,

85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

If you are really opposed to using O2 during your workouts, there are a few different things that might help you:

1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.


Chris

26 m w/CF

ladybug
05-29-2007, 05:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>




85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

<b>Can you please link me to such studies? I spent over an hour looking for any atricles about studying what your O2 sats should be DURING exercise and couldn't find anything online. I would LOVE to read about this.</b>



If you are really opposed to using O2 during your workouts, there are a few different things that might help you:



1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

<b>Well, I live in Vegas, so unfortunately we only have about 2-3 months that are appropriate running weather. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only that, but we have blowing dust here nearly every single day and bad air quality days at least 2-4 times a week. Its gotten very very bad. <img src="i/expressions/face-icon-small-sad.gif" border="0"></b>



2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

<b>I currently warm up with a walk for 5 minutes at 0.0 incline and then run and then run uphill for 15 minutes or so and then walk for another 5-8 minutes at 0.0 incline for a cool down. I could maybe use a longer warm up? What SHOULD a warm up be? I walk slow and increase my speed during those 5 minutes.</b>



3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

<b>Yes, this is what I will have to consider. I don't want to inhibit myself just cause I don't want to wear O2. </b>

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

<b>I totally agree! I LOVE it!</b>

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.

<b>Hmm... well, I'd heard the 60-75 beats rule before in gym classes and stuff too, and thought its a general rule of thumb, I think its more accurate than the 220-age is max HR that everyone talks about. It makes more sense on a personal level. I totally agree though that you need to look at the BIG picture and not just HR when determining a good level of exercise, so I will have this checked into. </b>

<b>I guess I trust what the medical professionals say they do in their hospitals and clinics, though as has been said, I may want to consult a professional EXERCISE physiologist instead of a nurse or doctors even. My docs didn't seem worried and kind of sluffed off my question about my HR getting to 180 before, so they didn't seem worried and never even mentioned checking my O2 sats (I just did that because people on here suggested it! LOL).... So, not too sure how accurate a CF doc's advise on exercise would be either. You go to a specialist for your lungs, so why not go to a specialist for exercise, right? I will maybe look into an exercise test of some sort here in Vegas, as my CF clinic is in Salt Lake and its about 2500 miles higher than what I'm used to, so when I go for my appts., just sitting in the room the day I get there I desat. LOL!</b>

<b>Thanks for all the advice and info, everyone!!! I really really appreciate everyone's kind words and thoughts on this. As always, this site is very helpful and supportive!</b>

<b>GOOD FOR ALL OF US WHO GET OUT AND EXERCISE!!!</b>

ladybug
05-29-2007, 05:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>




85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

<b>Can you please link me to such studies? I spent over an hour looking for any atricles about studying what your O2 sats should be DURING exercise and couldn't find anything online. I would LOVE to read about this.</b>



If you are really opposed to using O2 during your workouts, there are a few different things that might help you:



1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

<b>Well, I live in Vegas, so unfortunately we only have about 2-3 months that are appropriate running weather. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only that, but we have blowing dust here nearly every single day and bad air quality days at least 2-4 times a week. Its gotten very very bad. <img src="i/expressions/face-icon-small-sad.gif" border="0"></b>



2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

<b>I currently warm up with a walk for 5 minutes at 0.0 incline and then run and then run uphill for 15 minutes or so and then walk for another 5-8 minutes at 0.0 incline for a cool down. I could maybe use a longer warm up? What SHOULD a warm up be? I walk slow and increase my speed during those 5 minutes.</b>



3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

<b>Yes, this is what I will have to consider. I don't want to inhibit myself just cause I don't want to wear O2. </b>

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

<b>I totally agree! I LOVE it!</b>

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.

<b>Hmm... well, I'd heard the 60-75 beats rule before in gym classes and stuff too, and thought its a general rule of thumb, I think its more accurate than the 220-age is max HR that everyone talks about. It makes more sense on a personal level. I totally agree though that you need to look at the BIG picture and not just HR when determining a good level of exercise, so I will have this checked into. </b>

<b>I guess I trust what the medical professionals say they do in their hospitals and clinics, though as has been said, I may want to consult a professional EXERCISE physiologist instead of a nurse or doctors even. My docs didn't seem worried and kind of sluffed off my question about my HR getting to 180 before, so they didn't seem worried and never even mentioned checking my O2 sats (I just did that because people on here suggested it! LOL).... So, not too sure how accurate a CF doc's advise on exercise would be either. You go to a specialist for your lungs, so why not go to a specialist for exercise, right? I will maybe look into an exercise test of some sort here in Vegas, as my CF clinic is in Salt Lake and its about 2500 miles higher than what I'm used to, so when I go for my appts., just sitting in the room the day I get there I desat. LOL!</b>

<b>Thanks for all the advice and info, everyone!!! I really really appreciate everyone's kind words and thoughts on this. As always, this site is very helpful and supportive!</b>

<b>GOOD FOR ALL OF US WHO GET OUT AND EXERCISE!!!</b>

ladybug
05-29-2007, 05:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>




85 is definitely a little low... from what I've read, during aerobic exercise you should absolutely stay above 88, and as Amy mentioned before, a lot of dr.'s recommend staying above 90 or higher.

<b>Can you please link me to such studies? I spent over an hour looking for any atricles about studying what your O2 sats should be DURING exercise and couldn't find anything online. I would LOVE to read about this.</b>



If you are really opposed to using O2 during your workouts, there are a few different things that might help you:



1) Can you run outside? The air quality will likely be better than your 80 degree recycled air gym, which might help. The scenery will keep changing too, which you might find you enjoy more. If at some point you find you need to use 02, it might be a lot more comfortable to use it outside than in the gym setting. Either way, once you tell one or two people why you're using it, they'll all think you're a champion.

<b>Well, I live in Vegas, so unfortunately we only have about 2-3 months that are appropriate running weather. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only that, but we have blowing dust here nearly every single day and bad air quality days at least 2-4 times a week. Its gotten very very bad. <img src="i/expressions/face-icon-small-sad.gif" border="0"></b>



2) Warm up SLOWLY. If you increase the amount of time you take to go from resting to walking, to walking faster, to running, your body will do a better job at keeping up with your oxygen needs, and may not drop as much when you start running.

<b>I currently warm up with a walk for 5 minutes at 0.0 incline and then run and then run uphill for 15 minutes or so and then walk for another 5-8 minutes at 0.0 incline for a cool down. I could maybe use a longer warm up? What SHOULD a warm up be? I walk slow and increase my speed during those 5 minutes.</b>



3) Its possible, even likely, that you may have to slow down A LOT to keep your sats from dropping below 90. That lower intensity exercise is still valuable, but maybe not as much as the higher intenisity with a little help from oxygen.

<b>Yes, this is what I will have to consider. I don't want to inhibit myself just cause I don't want to wear O2. </b>

What ever you do, I definitely think you should do whatever you can to keep exercising... its such a critical part of optimizing and maintaining lung health.

<b>I totally agree! I LOVE it!</b>

I don't know what my O2 sats do while I'm exercising, but I do train with heart rate, which I've used as a decent proxy. The increase of 60 beats rule your nurse mentioned is a very rough estimate of where you could expect your anaerobic threshold to be. Given that your resting heart rate is a little high, and you are desating, I would say its not a perfect fit for you.

<b>Hmm... well, I'd heard the 60-75 beats rule before in gym classes and stuff too, and thought its a general rule of thumb, I think its more accurate than the 220-age is max HR that everyone talks about. It makes more sense on a personal level. I totally agree though that you need to look at the BIG picture and not just HR when determining a good level of exercise, so I will have this checked into. </b>

<b>I guess I trust what the medical professionals say they do in their hospitals and clinics, though as has been said, I may want to consult a professional EXERCISE physiologist instead of a nurse or doctors even. My docs didn't seem worried and kind of sluffed off my question about my HR getting to 180 before, so they didn't seem worried and never even mentioned checking my O2 sats (I just did that because people on here suggested it! LOL).... So, not too sure how accurate a CF doc's advise on exercise would be either. You go to a specialist for your lungs, so why not go to a specialist for exercise, right? I will maybe look into an exercise test of some sort here in Vegas, as my CF clinic is in Salt Lake and its about 2500 miles higher than what I'm used to, so when I go for my appts., just sitting in the room the day I get there I desat. LOL!</b>

<b>Thanks for all the advice and info, everyone!!! I really really appreciate everyone's kind words and thoughts on this. As always, this site is very helpful and supportive!</b>

<b>GOOD FOR ALL OF US WHO GET OUT AND EXERCISE!!!</b>

Chaggie
05-29-2007, 05:57 PM
This isn't a study, but it is published.


<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a>

Chaggie
05-29-2007, 05:57 PM
This isn't a study, but it is published.


<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a>

Chaggie
05-29-2007, 05:57 PM
This isn't a study, but it is published.


<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a>

ladybug
05-29-2007, 06:05 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

This isn't a study, but it is published.





<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a></end quote></div>

Chris,

Thank you! That was great! I'm wondering, however, if they're testing at peak exercise or immediately AFTER as the hospital the nurse I spoke to does?? If they do it immediately AFTER exercise and you're still under 90%, that is what the nurse said is bad too and would coincide with this information. Are there any studies that you know of that show WHEN to test?? The nurse had said that exercise O2 is taken immediately upon stopping the exercise. This article just says "with exercise", not during. Just curious. We may be saying the same thing?

ladybug
05-29-2007, 06:05 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

This isn't a study, but it is published.





<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a></end quote></div>

Chris,

Thank you! That was great! I'm wondering, however, if they're testing at peak exercise or immediately AFTER as the hospital the nurse I spoke to does?? If they do it immediately AFTER exercise and you're still under 90%, that is what the nurse said is bad too and would coincide with this information. Are there any studies that you know of that show WHEN to test?? The nurse had said that exercise O2 is taken immediately upon stopping the exercise. This article just says "with exercise", not during. Just curious. We may be saying the same thing?

ladybug
05-29-2007, 06:05 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

This isn't a study, but it is published.





<a target=_blank class=ftalternatingbarlinklarge href="http://www.bcbst.com/MPManual/Oxygen_and_Oxygen_Supplies.htm">http://www.bcbst.com/MPManual/...nd_Oxygen_Supplies.htm</a></end quote></div>

Chris,

Thank you! That was great! I'm wondering, however, if they're testing at peak exercise or immediately AFTER as the hospital the nurse I spoke to does?? If they do it immediately AFTER exercise and you're still under 90%, that is what the nurse said is bad too and would coincide with this information. Are there any studies that you know of that show WHEN to test?? The nurse had said that exercise O2 is taken immediately upon stopping the exercise. This article just says "with exercise", not during. Just curious. We may be saying the same thing?

LisaV
05-29-2007, 06:11 PM
OK I'm going to stick my neck out here and be a bit flat footed. (Did it with my late husband and took his guff, so you guys are amateurs.)

I think you're rationalizing away your need for oxygen during exercise.
Medicare would pay for you to have oxygen according to their guidelines (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.tricenturion.com/content/Doc_View.cfm?type=LCDCurr&File=lcd+for+oxygen+and+oxygen+equipment+1206.htm">http://www.tricenturion.com/co...gen+equipment+1206.htm</a> ).
"An arterial PO 2 at or below 55 mm Hg or an arterial oxygen saturation at or below 88 percent, taken during exercise for a patient who demonstrates an arterial PO 2 at or above 56 mm Hg or an arterial oxygen saturation at or above 89 percent during the day while at rest. In this case, oxygen is provided for during exercise if it is documented that the use of oxygen improves the hypoxemia that was demonstrated during exercise when the patient was breathing room air."

And let me tell you Medicare is cheap cheap cheap. (Lots of docs would like to see people on O2 once sats drop below 90.)
IMHO (and experience) It is more important to stay as strong as you can (exercise as hard as you can) than it is to stay off of oxygen.
Being desated like you are now is just damaging your heart.

Your plan of just exercising less (and less and less and less?) in order to stay off of oxygen is counterproductive to being in the best shape you can be.

LisaV
05-29-2007, 06:11 PM
OK I'm going to stick my neck out here and be a bit flat footed. (Did it with my late husband and took his guff, so you guys are amateurs.)

I think you're rationalizing away your need for oxygen during exercise.
Medicare would pay for you to have oxygen according to their guidelines (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.tricenturion.com/content/Doc_View.cfm?type=LCDCurr&File=lcd+for+oxygen+and+oxygen+equipment+1206.htm">http://www.tricenturion.com/co...gen+equipment+1206.htm</a> ).
"An arterial PO 2 at or below 55 mm Hg or an arterial oxygen saturation at or below 88 percent, taken during exercise for a patient who demonstrates an arterial PO 2 at or above 56 mm Hg or an arterial oxygen saturation at or above 89 percent during the day while at rest. In this case, oxygen is provided for during exercise if it is documented that the use of oxygen improves the hypoxemia that was demonstrated during exercise when the patient was breathing room air."

And let me tell you Medicare is cheap cheap cheap. (Lots of docs would like to see people on O2 once sats drop below 90.)
IMHO (and experience) It is more important to stay as strong as you can (exercise as hard as you can) than it is to stay off of oxygen.
Being desated like you are now is just damaging your heart.

Your plan of just exercising less (and less and less and less?) in order to stay off of oxygen is counterproductive to being in the best shape you can be.

LisaV
05-29-2007, 06:11 PM
OK I'm going to stick my neck out here and be a bit flat footed. (Did it with my late husband and took his guff, so you guys are amateurs.)

I think you're rationalizing away your need for oxygen during exercise.
Medicare would pay for you to have oxygen according to their guidelines (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.tricenturion.com/content/Doc_View.cfm?type=LCDCurr&File=lcd+for+oxygen+and+oxygen+equipment+1206.htm">http://www.tricenturion.com/co...gen+equipment+1206.htm</a> ).
"An arterial PO 2 at or below 55 mm Hg or an arterial oxygen saturation at or below 88 percent, taken during exercise for a patient who demonstrates an arterial PO 2 at or above 56 mm Hg or an arterial oxygen saturation at or above 89 percent during the day while at rest. In this case, oxygen is provided for during exercise if it is documented that the use of oxygen improves the hypoxemia that was demonstrated during exercise when the patient was breathing room air."

And let me tell you Medicare is cheap cheap cheap. (Lots of docs would like to see people on O2 once sats drop below 90.)
IMHO (and experience) It is more important to stay as strong as you can (exercise as hard as you can) than it is to stay off of oxygen.
Being desated like you are now is just damaging your heart.

Your plan of just exercising less (and less and less and less?) in order to stay off of oxygen is counterproductive to being in the best shape you can be.

ladybug
05-29-2007, 06:24 PM
LisaV,

Thanks. I kind of am starting to agree with everyone on here, but also do NOT want to come to depend on O2. Perhaps there are other factors going on that I need to consult a physician for as well.... i.e. I do have an asthma component, so maybe they'll have me take a puff of albuterol or something before exercise, etc... I just want to "run" (pun intended) down all avenues first before making that leap, since I'd probably never again be able to run without it and this bothers me.

I have emailed my CF doc and asked what she thinks and whether I should do an exercise study to see exactly what is going on.

My O2 sats when sleeping is about 94-95. Running is absolutely the ONLY thing that brings it down. I do not want to get "hooked" on wearing it and needing it more often either. I just don't.

I do not have Medicare as I'm covered under private insurance. The money is not the issue as much as necessity and also how dependant I will become on the stuff. (I know this is a totally other issue, though... the dependance thing...)

Anyway, thanks for posting the info. Did I read the article wrong? Did it say "during" in the article Chris posted? Urgh. Maybe I do loose brain cells when I run! LOL

ladybug
05-29-2007, 06:24 PM
LisaV,

Thanks. I kind of am starting to agree with everyone on here, but also do NOT want to come to depend on O2. Perhaps there are other factors going on that I need to consult a physician for as well.... i.e. I do have an asthma component, so maybe they'll have me take a puff of albuterol or something before exercise, etc... I just want to "run" (pun intended) down all avenues first before making that leap, since I'd probably never again be able to run without it and this bothers me.

I have emailed my CF doc and asked what she thinks and whether I should do an exercise study to see exactly what is going on.

My O2 sats when sleeping is about 94-95. Running is absolutely the ONLY thing that brings it down. I do not want to get "hooked" on wearing it and needing it more often either. I just don't.

I do not have Medicare as I'm covered under private insurance. The money is not the issue as much as necessity and also how dependant I will become on the stuff. (I know this is a totally other issue, though... the dependance thing...)

Anyway, thanks for posting the info. Did I read the article wrong? Did it say "during" in the article Chris posted? Urgh. Maybe I do loose brain cells when I run! LOL

ladybug
05-29-2007, 06:24 PM
LisaV,

Thanks. I kind of am starting to agree with everyone on here, but also do NOT want to come to depend on O2. Perhaps there are other factors going on that I need to consult a physician for as well.... i.e. I do have an asthma component, so maybe they'll have me take a puff of albuterol or something before exercise, etc... I just want to "run" (pun intended) down all avenues first before making that leap, since I'd probably never again be able to run without it and this bothers me.

I have emailed my CF doc and asked what she thinks and whether I should do an exercise study to see exactly what is going on.

My O2 sats when sleeping is about 94-95. Running is absolutely the ONLY thing that brings it down. I do not want to get "hooked" on wearing it and needing it more often either. I just don't.

I do not have Medicare as I'm covered under private insurance. The money is not the issue as much as necessity and also how dependant I will become on the stuff. (I know this is a totally other issue, though... the dependance thing...)

Anyway, thanks for posting the info. Did I read the article wrong? Did it say "during" in the article Chris posted? Urgh. Maybe I do loose brain cells when I run! LOL

ladybug
05-29-2007, 06:30 PM
Nevermind... I'm seeing now that its what Medicare considers criteria for O2. Duh. My bad.

Thanks!

ladybug
05-29-2007, 06:30 PM
Nevermind... I'm seeing now that its what Medicare considers criteria for O2. Duh. My bad.

Thanks!

ladybug
05-29-2007, 06:30 PM
Nevermind... I'm seeing now that its what Medicare considers criteria for O2. Duh. My bad.

Thanks!

cdale613
05-29-2007, 06:52 PM
Hi Sonia,

The National Lung Health Education Program has a lot of useful info, although most of it is directed at the larger COPD/emphasema crowd.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/resources/Prescrb-Hm-Oxygen/Introduction-2.html
">http://www.nlhep.org/resources...n/Introduction-2.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf
">http://www.nlhep.org/pdfs/lt_oxygen.pdf
</a>
The National Heart Lung and Blood Institute also has a lot of non CF specific lung information:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/index.htm">http://www.nhlbi.nih.gov/index.htm</a>

-------
Sorry to hear about the living in Vegas... I lived in Washington DC for a couple years, and it was horrible. Sounds like you are better off inside...

-------
Your current routine sounds good, but since your sats drop off so sharply, you might need to make it more gradual inorder to keep your sats higher.

I'd suggest tring five minute increments of: walk, slow jog, run, slow jog, walk. That should keep your workout time about the same, but lessen the intensity... see what your sats do then and go from there.
--------

Sure - the 60 beats thing is a rule of thumb, but not everyone's thumb is the same... The 60 beats thing makes an assumption that your standing heart rate is around 60-80 (which is considered "normal") and that your max is somewhere in the high 180-190s. Its an easy tool that people in gym classes and what not can use without having anything other than their fingers and a stop watch, without having tested their max. heart rate or V02 max, and who know nothing else about their cardio-vascular system, which gives it a degree of universality.

However, you've given us a lot of information that says this rule doesn't strictly apply to you. Your resting heart rate is somewhat high, and when you add 60 beats to it, you know your sats are slightly lower than they should be, indicating that you're above your aerobic threshold at that point.
---------
I definitely agree that your CF doc might not be the best resource for these questions; however, an exercise physiologist who knows nothing about CF won't necessarily be a huge help either. To really get precise answers, you would need a combination of the two. My recommendation is to see what tests your CF docs can give you ... maybe an ECG?, and to work with him/her to find the answers you're looking for. At the least, make them explain to you why they aren't concerned.

Hope this helps!

Chris

26 m w/cf

cdale613
05-29-2007, 06:52 PM
Hi Sonia,

The National Lung Health Education Program has a lot of useful info, although most of it is directed at the larger COPD/emphasema crowd.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/resources/Prescrb-Hm-Oxygen/Introduction-2.html
">http://www.nlhep.org/resources...n/Introduction-2.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf
">http://www.nlhep.org/pdfs/lt_oxygen.pdf
</a>
The National Heart Lung and Blood Institute also has a lot of non CF specific lung information:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/index.htm">http://www.nhlbi.nih.gov/index.htm</a>

-------
Sorry to hear about the living in Vegas... I lived in Washington DC for a couple years, and it was horrible. Sounds like you are better off inside...

-------
Your current routine sounds good, but since your sats drop off so sharply, you might need to make it more gradual inorder to keep your sats higher.

I'd suggest tring five minute increments of: walk, slow jog, run, slow jog, walk. That should keep your workout time about the same, but lessen the intensity... see what your sats do then and go from there.
--------

Sure - the 60 beats thing is a rule of thumb, but not everyone's thumb is the same... The 60 beats thing makes an assumption that your standing heart rate is around 60-80 (which is considered "normal") and that your max is somewhere in the high 180-190s. Its an easy tool that people in gym classes and what not can use without having anything other than their fingers and a stop watch, without having tested their max. heart rate or V02 max, and who know nothing else about their cardio-vascular system, which gives it a degree of universality.

However, you've given us a lot of information that says this rule doesn't strictly apply to you. Your resting heart rate is somewhat high, and when you add 60 beats to it, you know your sats are slightly lower than they should be, indicating that you're above your aerobic threshold at that point.
---------
I definitely agree that your CF doc might not be the best resource for these questions; however, an exercise physiologist who knows nothing about CF won't necessarily be a huge help either. To really get precise answers, you would need a combination of the two. My recommendation is to see what tests your CF docs can give you ... maybe an ECG?, and to work with him/her to find the answers you're looking for. At the least, make them explain to you why they aren't concerned.

Hope this helps!

Chris

26 m w/cf

cdale613
05-29-2007, 06:52 PM
Hi Sonia,

The National Lung Health Education Program has a lot of useful info, although most of it is directed at the larger COPD/emphasema crowd.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/resources/Prescrb-Hm-Oxygen/Introduction-2.html
">http://www.nlhep.org/resources...n/Introduction-2.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf
">http://www.nlhep.org/pdfs/lt_oxygen.pdf
</a>
The National Heart Lung and Blood Institute also has a lot of non CF specific lung information:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/index.htm">http://www.nhlbi.nih.gov/index.htm</a>

-------
Sorry to hear about the living in Vegas... I lived in Washington DC for a couple years, and it was horrible. Sounds like you are better off inside...

-------
Your current routine sounds good, but since your sats drop off so sharply, you might need to make it more gradual inorder to keep your sats higher.

I'd suggest tring five minute increments of: walk, slow jog, run, slow jog, walk. That should keep your workout time about the same, but lessen the intensity... see what your sats do then and go from there.
--------

Sure - the 60 beats thing is a rule of thumb, but not everyone's thumb is the same... The 60 beats thing makes an assumption that your standing heart rate is around 60-80 (which is considered "normal") and that your max is somewhere in the high 180-190s. Its an easy tool that people in gym classes and what not can use without having anything other than their fingers and a stop watch, without having tested their max. heart rate or V02 max, and who know nothing else about their cardio-vascular system, which gives it a degree of universality.

However, you've given us a lot of information that says this rule doesn't strictly apply to you. Your resting heart rate is somewhat high, and when you add 60 beats to it, you know your sats are slightly lower than they should be, indicating that you're above your aerobic threshold at that point.
---------
I definitely agree that your CF doc might not be the best resource for these questions; however, an exercise physiologist who knows nothing about CF won't necessarily be a huge help either. To really get precise answers, you would need a combination of the two. My recommendation is to see what tests your CF docs can give you ... maybe an ECG?, and to work with him/her to find the answers you're looking for. At the least, make them explain to you why they aren't concerned.

Hope this helps!

Chris

26 m w/cf

ladybug
05-29-2007, 07:55 PM
Thanks, Chris!

I will keep ya'll posted what my CF doc recommends. My hope is that she'll realize we need to all work together on which tests to do, etc...

I recently had an entire gammut of heart tests done (not while exercising though) ... EKG and ECHO and met with a cardiologist for heart palpatations. Everything checked out fine. So, unless they'd do an EKG, etc. WHILE running, I don't know that my heart needs further checking into.

As for the tests, PLEASE tell me they won't do blood gasses when I'm running! OR AFTER for that matter. I HATE those things and garauntee that unless they give me valium with my run I will NOT have good results. My HR goes to 150 just THINKING about that test!!!
LOL

ladybug
05-29-2007, 07:55 PM
Thanks, Chris!

I will keep ya'll posted what my CF doc recommends. My hope is that she'll realize we need to all work together on which tests to do, etc...

I recently had an entire gammut of heart tests done (not while exercising though) ... EKG and ECHO and met with a cardiologist for heart palpatations. Everything checked out fine. So, unless they'd do an EKG, etc. WHILE running, I don't know that my heart needs further checking into.

As for the tests, PLEASE tell me they won't do blood gasses when I'm running! OR AFTER for that matter. I HATE those things and garauntee that unless they give me valium with my run I will NOT have good results. My HR goes to 150 just THINKING about that test!!!
LOL

ladybug
05-29-2007, 07:55 PM
Thanks, Chris!

I will keep ya'll posted what my CF doc recommends. My hope is that she'll realize we need to all work together on which tests to do, etc...

I recently had an entire gammut of heart tests done (not while exercising though) ... EKG and ECHO and met with a cardiologist for heart palpatations. Everything checked out fine. So, unless they'd do an EKG, etc. WHILE running, I don't know that my heart needs further checking into.

As for the tests, PLEASE tell me they won't do blood gasses when I'm running! OR AFTER for that matter. I HATE those things and garauntee that unless they give me valium with my run I will NOT have good results. My HR goes to 150 just THINKING about that test!!!
LOL

NoExcuses
05-29-2007, 09:53 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Are there any studies that you know of that show WHEN to test??

</end quote></div>


At any point of your exercise, or your existence for that matter, you do'nt want to desat.

Doesn't matter in the beginning, middle or end.

I know this is tough for you and it seems like you are trying to come up with any reason under the sun not to need O2, but if you're de-satting, you're not doing your body a favor by avoiding what's going on.

I hope you come to terms with this sooner rather than later for your body's sake <img src="i/expressions/brokenheart.gif" border="0">

NoExcuses
05-29-2007, 09:53 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Are there any studies that you know of that show WHEN to test??

</end quote></div>


At any point of your exercise, or your existence for that matter, you do'nt want to desat.

Doesn't matter in the beginning, middle or end.

I know this is tough for you and it seems like you are trying to come up with any reason under the sun not to need O2, but if you're de-satting, you're not doing your body a favor by avoiding what's going on.

I hope you come to terms with this sooner rather than later for your body's sake <img src="i/expressions/brokenheart.gif" border="0">

NoExcuses
05-29-2007, 09:53 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Are there any studies that you know of that show WHEN to test??

</end quote></div>


At any point of your exercise, or your existence for that matter, you do'nt want to desat.

Doesn't matter in the beginning, middle or end.

I know this is tough for you and it seems like you are trying to come up with any reason under the sun not to need O2, but if you're de-satting, you're not doing your body a favor by avoiding what's going on.

I hope you come to terms with this sooner rather than later for your body's sake <img src="i/expressions/brokenheart.gif" border="0">

ladybug
05-29-2007, 09:56 PM
The following is EXACTLY what my CF Nurse Practitioner e-mailed me today after I e-mailed her the exact same concerns I've been chatting about on this thread...

<i>I can give you a nurse perspective on your questions, I am not an expert. First of all, you have had an echo, right? Secondly, when your O2 sats drop, your heart rate will automatically increase. It is not unusual to have an increase like you have when your resting heart rate is a little high. The fact that you feel energized by your workouts is a most important sign, and the fact that you return to normal quickly is excellent, showing signs of good aerobic fitness, but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. I believe it is a little premature for an exercise study or stress test, but you could approach the Dr. with that on your next clinic visit. Feel assured that there is no immediate concern, that when you become symptomatic during exercise, it will be time to look into further testing. </i>

ladybug
05-29-2007, 09:56 PM
The following is EXACTLY what my CF Nurse Practitioner e-mailed me today after I e-mailed her the exact same concerns I've been chatting about on this thread...

<i>I can give you a nurse perspective on your questions, I am not an expert. First of all, you have had an echo, right? Secondly, when your O2 sats drop, your heart rate will automatically increase. It is not unusual to have an increase like you have when your resting heart rate is a little high. The fact that you feel energized by your workouts is a most important sign, and the fact that you return to normal quickly is excellent, showing signs of good aerobic fitness, but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. I believe it is a little premature for an exercise study or stress test, but you could approach the Dr. with that on your next clinic visit. Feel assured that there is no immediate concern, that when you become symptomatic during exercise, it will be time to look into further testing. </i>

ladybug
05-29-2007, 09:56 PM
The following is EXACTLY what my CF Nurse Practitioner e-mailed me today after I e-mailed her the exact same concerns I've been chatting about on this thread...

<i>I can give you a nurse perspective on your questions, I am not an expert. First of all, you have had an echo, right? Secondly, when your O2 sats drop, your heart rate will automatically increase. It is not unusual to have an increase like you have when your resting heart rate is a little high. The fact that you feel energized by your workouts is a most important sign, and the fact that you return to normal quickly is excellent, showing signs of good aerobic fitness, but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. I believe it is a little premature for an exercise study or stress test, but you could approach the Dr. with that on your next clinic visit. Feel assured that there is no immediate concern, that when you become symptomatic during exercise, it will be time to look into further testing. </i>

NoExcuses
05-29-2007, 09:58 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. </i></end quote></div>



Sounds great! Very wise idea

NoExcuses
05-29-2007, 09:58 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. </i></end quote></div>



Sounds great! Very wise idea

NoExcuses
05-29-2007, 09:58 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

but it may be wise to use O2 during exercise and see if it helps. Do you have access to O2 right now? I thought you had O2 at home. </i></end quote></div>



Sounds great! Very wise idea

ladybug
05-29-2007, 10:01 PM
... except that i don't have O2 and never have, so I would need an exercise study to justify this to insurance (which she's saying is premature at this point)... urgh....

ladybug
05-29-2007, 10:01 PM
... except that i don't have O2 and never have, so I would need an exercise study to justify this to insurance (which she's saying is premature at this point)... urgh....

ladybug
05-29-2007, 10:01 PM
... except that i don't have O2 and never have, so I would need an exercise study to justify this to insurance (which she's saying is premature at this point)... urgh....

NoExcuses
05-29-2007, 11:54 PM
i bet she'll change her mind about the study being premature if she realizes that it's needed to get O2.

NoExcuses
05-29-2007, 11:54 PM
i bet she'll change her mind about the study being premature if she realizes that it's needed to get O2.

NoExcuses
05-29-2007, 11:54 PM
i bet she'll change her mind about the study being premature if she realizes that it's needed to get O2.

ladybug
05-30-2007, 12:01 AM
perhaps. we'll have to see. i am awaiting a response from my doctor.

as far as this email I got, my DH read through it too and said its a little confusing cause she kind of says 2 different things. first, she says its normal. then, later she says i could "try" O2. if its normal and there is no concern, why mention O2? do you think she just thinks i have it laying around my house and since i already have it, i should hook up and try it with exercise? or, do you think she meant unless i get symptomatic it should'n't matter? i'm kind of confused the more i read it. oh well. hopefully she'll clarify. seems if i DID start using O2 without a stress test or exercise study i wouldn't NEED an exercise study, eh? unless i didn't find releif with O2. same with her mentioning not becoming alarmed until i'm symptomatic. if i START O2, i shouldn't even BE symptomatic, so how would that even make sense? LOL

who knows? i'll keep ya'll posted.

ladybug
05-30-2007, 12:01 AM
perhaps. we'll have to see. i am awaiting a response from my doctor.

as far as this email I got, my DH read through it too and said its a little confusing cause she kind of says 2 different things. first, she says its normal. then, later she says i could "try" O2. if its normal and there is no concern, why mention O2? do you think she just thinks i have it laying around my house and since i already have it, i should hook up and try it with exercise? or, do you think she meant unless i get symptomatic it should'n't matter? i'm kind of confused the more i read it. oh well. hopefully she'll clarify. seems if i DID start using O2 without a stress test or exercise study i wouldn't NEED an exercise study, eh? unless i didn't find releif with O2. same with her mentioning not becoming alarmed until i'm symptomatic. if i START O2, i shouldn't even BE symptomatic, so how would that even make sense? LOL

who knows? i'll keep ya'll posted.

ladybug
05-30-2007, 12:01 AM
perhaps. we'll have to see. i am awaiting a response from my doctor.

as far as this email I got, my DH read through it too and said its a little confusing cause she kind of says 2 different things. first, she says its normal. then, later she says i could "try" O2. if its normal and there is no concern, why mention O2? do you think she just thinks i have it laying around my house and since i already have it, i should hook up and try it with exercise? or, do you think she meant unless i get symptomatic it should'n't matter? i'm kind of confused the more i read it. oh well. hopefully she'll clarify. seems if i DID start using O2 without a stress test or exercise study i wouldn't NEED an exercise study, eh? unless i didn't find releif with O2. same with her mentioning not becoming alarmed until i'm symptomatic. if i START O2, i shouldn't even BE symptomatic, so how would that even make sense? LOL

who knows? i'll keep ya'll posted.

ladybug
05-30-2007, 12:13 AM
Ok, in all fairness I said I'd post DH's results with my pulse ox WHILE running.

He starts at 99 sats and drops to 96 after about 3 miles at a very slow jog. He tells me he breathes through his nose the entire time and is NOT running for speed, but for distance, so he is certainly not working out as hard as I do (I breathe from my mouth almost the whole time and really workout hard). So, maybe next time he does a FAST run, I will also have him track it.

Oh, and his HR reaches 160.

So, there ya go.

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 12:13 AM
Ok, in all fairness I said I'd post DH's results with my pulse ox WHILE running.

He starts at 99 sats and drops to 96 after about 3 miles at a very slow jog. He tells me he breathes through his nose the entire time and is NOT running for speed, but for distance, so he is certainly not working out as hard as I do (I breathe from my mouth almost the whole time and really workout hard). So, maybe next time he does a FAST run, I will also have him track it.

Oh, and his HR reaches 160.

So, there ya go.

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 12:13 AM
Ok, in all fairness I said I'd post DH's results with my pulse ox WHILE running.

He starts at 99 sats and drops to 96 after about 3 miles at a very slow jog. He tells me he breathes through his nose the entire time and is NOT running for speed, but for distance, so he is certainly not working out as hard as I do (I breathe from my mouth almost the whole time and really workout hard). So, maybe next time he does a FAST run, I will also have him track it.

Oh, and his HR reaches 160.

So, there ya go.

<img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:03 AM
Ok, so hypothetically, if they let me get O2 while running, how big is it and will it fit in the little treadmill tray or will I have to wear it or what?? Now comes the logistical questions once I"ve made the decision to try it. I will be working out at Gold's Gym on a life fitness machine and not in a hospital setting and do not want a bulky O2 tank next to me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:03 AM
Ok, so hypothetically, if they let me get O2 while running, how big is it and will it fit in the little treadmill tray or will I have to wear it or what?? Now comes the logistical questions once I"ve made the decision to try it. I will be working out at Gold's Gym on a life fitness machine and not in a hospital setting and do not want a bulky O2 tank next to me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:03 AM
Ok, so hypothetically, if they let me get O2 while running, how big is it and will it fit in the little treadmill tray or will I have to wear it or what?? Now comes the logistical questions once I"ve made the decision to try it. I will be working out at Gold's Gym on a life fitness machine and not in a hospital setting and do not want a bulky O2 tank next to me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

mom2lillian
05-30-2007, 07:48 AM
Sonia-thanks for posting, keep it up. I am followng your progress, you could log onto cftube and see the o2 that Jerry has, its in his video in a small backpack. Thans for posting DH's info too as this reassures me since that is about where I go to in HR, I can get higher but try not to let it nad I am just getting in shape too. Thanks!

mom2lillian
05-30-2007, 07:48 AM
Sonia-thanks for posting, keep it up. I am followng your progress, you could log onto cftube and see the o2 that Jerry has, its in his video in a small backpack. Thans for posting DH's info too as this reassures me since that is about where I go to in HR, I can get higher but try not to let it nad I am just getting in shape too. Thanks!

mom2lillian
05-30-2007, 07:48 AM
Sonia-thanks for posting, keep it up. I am followng your progress, you could log onto cftube and see the o2 that Jerry has, its in his video in a small backpack. Thans for posting DH's info too as this reassures me since that is about where I go to in HR, I can get higher but try not to let it nad I am just getting in shape too. Thanks!

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

LisaV
05-30-2007, 12:25 PM
There is everything you ever wanted to know (or didn't) up at this site <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> . For your specific question about types of portable oxygen (sizes and such) see <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/weightsand%20durations.html">http://www.portableoxygen.org/...tsand%20durations.html</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/october.html">http://www.portableoxygen.org/october.html</a>.

I know lots of folks who run with the little liquid cannisters in a backpack.

You have what they sometimes refer to as "markedly reduced exercise tolerance". Several studies have indicated that for folks with this condition that using O2 with oxygen protects the heart from damage.
See page 3 and the section on the NOTT trial in <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlhep.org/pdfs/lt_oxygen.pdf">http://www.nlhep.org/pdfs/lt_oxygen.pdf</a> . Note too that they say it is hard to separate the benefits of using oxygen from exercise and good nutrition. (And remember if you can only exercise hard if you are ON oxygen then if you choose not to be on it you are choosing not only not to use O2 but also not to have the full benefits of exercise.)

P.S. Do not let the fact that these studies were done on patients with COPD lead you to believe that they do not apply to people with cystic fibrosis. COPD stands for "Chronic obstructive pulmonary disease" and there are many many chronic obstructive pulmonary diseases (not just emphysema, say from smoking). One of these is bronchiectasis and bronchiectasis is what folks with CF have (tho' it is not the only way you can get it).

P.S.2 I used the quote from Medicare not because I thought you were on Medicare, but because (generally) Medicare is much more restrictive about paying for O2 use that private insurance is so if Medicare thinks you qualify for O2, then you can be darn sure you do.

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

coltsfan715
05-30-2007, 01:18 PM
Okay I wanted to add a few things to this. I will admit I have NOT read all of the posts on this thread and apologize if it is repeat info.

One I have been told by the therapists and respiratory techs within the rehab center at the transplant center here that when you are exercising they prefer your sats stay in the 90s and preferably at around 93. They want you to be able to exercise and receive benefit from it and when your sats drop too low you start to get fatigued and the exercise is actually working against you instead of for you.

Also to add I have been told by my docs that if your sats drop below 90 that you should be on oxygen - so if you are below 90 when you exercise then you should probably be using it. If you are at 88 AFTER exercise you are most likely LOWER during exercise.

When your sats drop to low and you let them stay that way you are putting strain on your other organs. I went for a few months without O2 because I was fighting the idea of it and trying to rationalize the idea of my NOT needing it. It wasn't until I started the evaluation process for transplant and the doctor told me that the lack of O2 that I was dealing with daily was causing heart issues for me - Pulmonary Hypertension - that I resigned myself to using it fulltime. I accepted it at that point because I did NOT want to do further damage to my heart OR to any other organ that wasn't already damaged. I am not saying that working out and having low sats WILL give you heart problems or anything, just voicing the experience I had with low sats.

I personally noticed a HUGE difference when I actually started using the O2 - I felt so much better and was able to exercise with much more ease and did not feel like my heart would explode out of my chest the way I had before. I will also add that there are some cases I know of that people are kept at a lower saturation level because of CO2 retention and things like that - so just my docs and therapist wanting me to stay at a sat of 94 or better with exercise is NOT the same as the guy next to me that retains CO2 and has to keep his sats between 90-93/94 with exercise. It is dependant upon each patients needs. I am just stating what I have been told, what I have experienced and what may be helpful.

As for the idea of being "dependant on O2" there is a comment I wan"t to share with you. had a VERY hard with being Dependant on O2 as well - then I read something a few month ago that LisaV wrote - it was something along the lines of this

We are ALL dependant on O2 - some of us just need to use it in a more concentrated form to get what our body needs.

Again that is NOT verbatim what she said - but the general idea of it. That helped me come to terms with it alot more easily and I thought to myself you know you are right - everyone needs O2 I just need help with getting enough for me.

I hope that things work out and you can get what you need to keep working out and staying strong and don't fight the idea of it until you at least try it. You may be surprised at how much better you feel if you exercise WITH the O2. Just a thought.

Take Care,
Lindsey

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 04:18 PM
Lindsey, Thank you so much for sharing your experience with oxygen. It sounds like you were in a similar position to what I'm in now.

I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it.

I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run?

Anyway, those are my fears with this whole thing.

I totally agree with everyone on here though about putting the strain on my heart and maybe I (nor the cardiologist) can't see it. I guess I just need someone in the medical profession to tell me to use it and "here's why....". Right now, my CF clinic seems not at all alarmed.

Anyway, I have emailed them again about setting O2 up for me so I can try it. So, I will keep you posted with my saga.

Again, thanks to all who have been following this and offering insight. Thanks also for all the GREAT links! I will look at them when I get a bit more time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey: How are you feeling?? It was so nice to see your post. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

ladybug
05-30-2007, 06:16 PM
<b>Here's my other question:

Does it matter that I'm just getting over a bad cold that has moved into my lungs? I'm coughing up a lot more crap and feeling "rumbly" when I breathe, but I know its getting better slowly but surely. Sorry I didn't mention that before cause my HR was the original topic and that has stayed the same even when I'm well. But, I never checked my O2 when I was feeling totally "normal".... So, things like colds/allergies/reflux, etc. effect O2 during exercise?

Just curious. Not trying to not get O2. I'll get it anyway to have on hand, but just curious.

Thanks,</b>

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

NoExcuses
05-30-2007, 06:36 PM
*bangs head violently against the wall*

Sonia, you have CF. This is why you are de-satting.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:43 PM
Amy,

You did not answer my questions at all. Please reread. Thanks.

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote></div>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote></div>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote></div>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote></div>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

ladybug
05-30-2007, 06:48 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

I was watchign oprah after the show, an old tivo'd one and they had some docs on there talking abotu nutrition excercise etc. The ? was posed what do you eat before excercise and they said if you are working out hard not to eat fatty foods before you work out because it can inhibit your bodies ability to circulate blood I missed some of what they were sayign due to a fussy baby but basically the arteries are busy with working on the break down of the fat and cant dilate to the degree a hard workout requires.

</end quote>

Hmm... if the foods you eat effects your HR and how your body circulate blood, perhaps reflux, etc. would also effect this?

I know when my FEV1 dropped, but I had been having more heartburn, my doc said reflux can definitely effect FEV1. So, perhaps the same can happen with O2 saturation?

Anyone else know anything about this?

(P.S. I have already ASKED my doctors for O2, so this is not me making excuses... I WILL try the O2, but am also curious if these other factors effect it simply out of curiousity.) If allergies, reflux, colds, etc. effect FEV1 factors, then is it the same sort of thing with O2???

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote></div>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote></div>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote></div>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote></div>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

NoExcuses
05-30-2007, 06:49 PM
I did answer your question. You're grasping at straws as to why you are de-satting. As you said just two hours ago:

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

I really am resisting </end quote>



I have a cold. But I feel fine even though I'm de-satting.

I know this is a coping mechanism. Iknow this is hard. I know you don't want to be on O2. I know you're scared.

But the more you come up with excuses and road blocks and other ideas as to what is going on, the farther you push yourself away from treating your body the way it deserves.

You need O2. It just breaks my heart to see you running in circles like this.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

ladybug
05-30-2007, 06:57 PM
Amy,

Yes, I've asked the docs for O2 and am actually getting EXCITED to use it! I want to be able to run for miles and miles like my DH and not get tired... that would be amazing! Maybe I could even run a 5K like I've always wanted to. So, this is not the issue. Although, it seems my clinic may need some convincing. They're still not getting back to me on the issue as they seem to deem it "premature"... Urgh. I would think if its so serious they would want me to use it TODAY for my run...

Anyway, had I not posted regarding my own situation, and had I simply posted this as a question regarding O2 and whether other factors can effect a drop, I don't think people would think I was grasping at straws. Which I'm NOT. I'm looking forward to O2 (not wearing it at the gym), but I'm looking forward to being better to my heart.

In the same respect, I am curious if other factors come into play with ANYONE'S O2 sats, not just mine. Is it normal for a cold, allergies, reflux, etc. to effect O2 while exercising? That's all I'm asking. As though it were its own seperate entity and seperate post.

Colds, allergies, and reflux effect soooo much with CF. So many tests are skewed because of it. SO, could this be yet another test that isn't entirely accurate at those times??? That's all I'm asking.

... Either way, I'm starting O2... I'm adamant about it (even though my nurses aren't so sure) because of the responses I've gotten. It has nothing to do with me trying to justify NOT having it.

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

27 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:38 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

cdale613
05-30-2007, 07:39 PM
In Sonia's defense:

1) I think its an entirely reasonable question. Yes Amy, she has CF. What happens when you exercise with CF? Little chucks of crap work loose and block of parts of your airway, until you can clear them. What happens when little chunks of crap block your airways?? Less oxygen gets to your small airways, and guess what? You desat. So... not to imply she still doesn't need O2, but its very reasonable to talk about mechanism of the desating, and if she's particularly congested right now, its worth knowing.

2) I think its important to point out that she's taken her o2 level once while exercising. I think she's ok wanting to get more information than one sample point. If she takes her levels again in a couple days when she's feeling better and still desats that will only strengthen the voice in her head saying she has to get the o2.


3) Generally speaking. I also think she owes it to herself to ask all the questions she wants in order to feel comfortable taking a step that I think its fair to say everyone would prefer not to take. Bottom line is, she's the one who has to make the decision and live with the good and bad. As someone who resisted IVs for years for similar reasons, she's the one who has to live with the o2, and if accepting that and being comfortable with that, and being able to build up the courage to out in public and exercise at her gym with it means asking questions and taking the time to figure it out than so be it. I don't see how accusing her of "grasping at straws" and other such accusations are supportive.

Carry on.

Chris

26 m w/CF

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote></div>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote></div>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote></div>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote></div>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote></div>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote></div>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote></div>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote></div>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

coltsfan715
05-30-2007, 08:47 PM
Hey Sonia I wanted to reply to this that you said after I posted last time.

<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote>

I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.

I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.

I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.

<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote>

As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.

I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.

Take Care of yourself,
Lindsey

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-30-2007, 09:06 PM
Chris,

Thank you so much for your supportive words. I ask TONS of questions in general and, as you say, for something that none of us want to do but may be necessary, it is expected I will ask even more. I think knowledge is power and if I know everything about the what, when, where and WHY, I will be more at peace when I make a change in my CF routine. I am inquistitive in general and want to know WHY desatting happens and what, if anything, other than having lung disease, can cause desatting. I also don't feel its a particularily odd question to ask (and believe me, I've asked LOTS of odd ones! LOL) So, I appreciate you coming to my defense and putting my mind at ease. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey,

Thank you for your informative post. I totally agree that this disease is so unpredictable and that is probably the worst part for me. Yet, I look back and think I've never actually followed my O2 sats before so who knows if they've been this low for years (in that case O2 is warranted much quicker, I think) or if this is something acute that is happening. Would have been interesting to have tracked this in the several different states I've lived in to see if it is air quality, etc. related. Either way, I know how it stands now that O2 is of high priority and I personally think the clinic should be jumping on this right away (at the very least the doc should be responding to my concerns).

I find the info. on ECHOS and EKGs, etc. interesting. Makes me loose a little bit of faith in these tests that are supposed to show any abnormalities. I guess it is sort of like a bronch though... you give sputum that you can cough up and they test that and plan accordingly until you have new or worsening symptoms and only then do they go in and get a better sample. So, with the invasive heart test you had, I'm sure it is looked at as something they do if there are problems as well (or in your case for tx) and not a usual heart test if all else comes back ok.

... Anyway, to make a long response short, I appreciate everyone replying. I really didn't imagine I would get so much great information, stories, and support on this. It really is amazing to have people that will take the time to sit down and go through this with me.

I will keep everyone posted on what the doc says.

Thanks,

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

ladybug
05-31-2007, 01:01 AM
Thought I'd post another update. Sorry if people are getting sick of this topic. LOL

I just went to the gym and did a workout on the elliptical machine. I pushed myself pretty hard (though not as hard as when I run) and was sweating and even coughing more than when I run. Well, my sats stayed at about 93-96 the entire first 15 minutes, dropping to about 90 toward the 20 minute mark and then when I finished my workout at the very end when I was SLOWING DOWN and doing a cool down, my O2 went to 87! WTF?!? It showed my HR at 174 the entire time I was working out hard until my cool down when it dropped to 160. So, now I"m totally confused. Do I do a workout that is still getting my HR up and getting my O2 at a decent level? OR, do I continue insisting on my hard run and get supplemental O2? I have no idea what is the better thing in the low run to do... Is it possible my run is just WAY too intense for my lung capacity to keep up with and I need to SLOW DOWN my workouts?? If my HR and O2 get in a more normal range with a slower pace, I'm still benefitting from the workout as much as if I wore O2 but worked out harder, right? Urgh..... I'm so confused what to do.

I will keep everyone posted as I track my results and let ya'll know what my doc says (still hasn't responded... **sigh**)... I guess I should have a blog for this sort of thing, eh?

I haven't done the elliptical in years (since I started running), so this was a new sort of workout for me.... definitely less cardio and more muscular involvement! LOL I also think its interesting I coughed a TON more when using the elliptical. I rarely cough at all when I run. Hmmmm.....

If anyone has anything to comment on after tonight's better O2 numbers, let me know.

Thanks!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

kybert
05-31-2007, 04:47 AM
i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.

but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote></div>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote></div>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote></div>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote></div>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

ladybug
05-31-2007, 05:07 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

i still feel you are working out way too hard. exercise is great and all but pushing yourself too hard is pointless. yes, your body will still benefit from exercise if you slow down. it seems as if you are scared to slow down. why? is it because you think your lung function will drop? because it shouldnt as long as you still do moderate exercise.



but either way, using oxygen or slowing down, it will acheive the same result and thats keeping your o2 up. so go with whatever, but make sure you do something about it!</end quote>

Kylie:

Yes, I'm very afraid that if I don't run as hard as I have been (which resulted in a 7% increase in FEV1 over the past couple of years), I may loose some of what I've gained. I know its kinda silly, but I actually didn't gain the FEV1 when I just did elliptical. So, I do worry very much that I will slide backward if I slow anything down. I know I'm probably just really paranoid. And, I feel GOOD that I was able to keep my O2 sats and HR (though still a bit high) at a decent level with the elliptical. Plus, I really felt it helped me cough more out, which is odd, cause like I said, running NEVER has this effect. *** sigh *** Sorry if I'm a broken record. I love that people are giving their thoughts on this. It really does help me look at the different perspectives while I impatiently wait to hear from the doc! LOL

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

kybert
05-31-2007, 11:13 AM
lets say you lose 7% if you cut back, would it really be that bad? as long as you still feel good and thats all it drops it doesnt seem like a huge issue. its not like you will go into a downward spiral. in most circumstanes losing lung function would be disastrous but in yours it doesnt seem all that bad considering its not too far off the baseline you had a couple of years ago. it just seems like so much effort for such little gain. you might have that extra 7% but you are also having low sats and giving your heart one hell of a thrashing. if the thought of losing the lung function you gained worries you a lot then go for the oxygen. im sure you will adjust to o2 just fine.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LisaV
05-31-2007, 11:39 AM
Hah. Never tired of this discussion since staying in as good as shape as possible was key to my late husband's longevity with decent quality of life. (And for others important for good tx results. )Here's some more reading....

National Guidelines for pulmonary rehabilitation <a target=_blank class=ftalternatingbarlinklarge href="http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3211&nbr=2437
">http://www.guideline.gov/summa...&doc_id=3211&nbr=2437
</a>See the paper at <a target=_blank class=ftalternatingbarlinklarge href="http://www.rehab.research.va.gov/jour/03/40/5Sup2/Rochester.html">http://www.rehab.research.va.g...0/5Sup2/Rochester.html</a> for a brief discussion of the rationale for exercise training and a discussion of virtues of different types of traning (for examnple, Aerobic Versus Strength Training).
I can't find the article now, but I remember reading that when your big muscles (like thigh muscles) get weak that it takes a heck of a lot more oxygen to use them than when they are strong. Of course, once one is really badly deconditioned then doing most anything really takes lots of O2.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

LouLou
05-31-2007, 12:24 PM
I think you should get O2 Sonia. If your cf doctor won't prescribe it tell them you'll have to get it from your general practicioner. Don't waste your time trying to debate whether it's necessary, especially with a nurse. 87 is unacceptable to you and to everyone on this site. I don't think you should cut back your exercise capacity. Use it or lose it. If you are able to maintain a pace for 20 minutes I would say you can handle it. But your O2 sat is concerning.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

cf4life
05-31-2007, 02:56 PM
I'd mention it to your doctor, but I don't think you should get o2, but just should cut back on the intensity of your training. I also doubt insurance would cover o2 since a six minute walk would not show your o2 dropping below 90.

Also, you really don't want to introduce o2 before you need to. If you can exercise for 20 minutes on the elliptical, then just recover for a while and then go back at it. Just go at it until you reach down to 90-91 and then recover. It may just mean you need to exercise longer at lesser intensity, but you should get the same overall benifit. I know even there are some that say it is the amount of time you exercise and not the intensity that is the most benifit.

ladybug
05-31-2007, 06:40 PM
Yes, I've actually read articles in magazines and online that the length of exercise at a good aerobic level is much more beneficial than a very intense exercise for a shorter amount of time. My guess is I could last on the elliptical for quite awhile at the level I was at yesterday. So, perhaps I could do an hour on the elliptical at a comfortable (yet cardio) pace versus a 20 minute wipe-you-out run. At this point I just feel trying different things to see what happens seems rational before taking the jumpt to O2. Obviously O2 at 83-87 with exercise is unnacceptable, so I won't continue what I'm doing.

My biggest issue is that I really would like someone to do an accurate exercise study to see what happens to my heart and lungs during an entire run and entire elliptical and have someone sit down and tell me what is good for me with CF. I don't even know if this is possible, but I don't know how much I trust my monitor. I mean, yesterday when I was on the elliptical, it kept my HR at exactly 174 from the warm up to the cool down, which makes no sense since I bumped up and down the intensity and speed and with a run I fluctuate a lot with intensity. This is frustrating.

And, yes, if I want to keep on with my intense run I will certainly get O2... don't worry. I just don't know if THAT'S the better thing to do (become where I need the O2 to keep up my run) or if its still just as beneficial to do the elliptical with my OWN O2 doing just fine. Urgh.

Anyway... I will keep ya'll posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-31-2007, 06:40 PM
Yes, I've actually read articles in magazines and online that the length of exercise at a good aerobic level is much more beneficial than a very intense exercise for a shorter amount of time. My guess is I could last on the elliptical for quite awhile at the level I was at yesterday. So, perhaps I could do an hour on the elliptical at a comfortable (yet cardio) pace versus a 20 minute wipe-you-out run. At this point I just feel trying different things to see what happens seems rational before taking the jumpt to O2. Obviously O2 at 83-87 with exercise is unnacceptable, so I won't continue what I'm doing.

My biggest issue is that I really would like someone to do an accurate exercise study to see what happens to my heart and lungs during an entire run and entire elliptical and have someone sit down and tell me what is good for me with CF. I don't even know if this is possible, but I don't know how much I trust my monitor. I mean, yesterday when I was on the elliptical, it kept my HR at exactly 174 from the warm up to the cool down, which makes no sense since I bumped up and down the intensity and speed and with a run I fluctuate a lot with intensity. This is frustrating.

And, yes, if I want to keep on with my intense run I will certainly get O2... don't worry. I just don't know if THAT'S the better thing to do (become where I need the O2 to keep up my run) or if its still just as beneficial to do the elliptical with my OWN O2 doing just fine. Urgh.

Anyway... I will keep ya'll posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-31-2007, 06:40 PM
Yes, I've actually read articles in magazines and online that the length of exercise at a good aerobic level is much more beneficial than a very intense exercise for a shorter amount of time. My guess is I could last on the elliptical for quite awhile at the level I was at yesterday. So, perhaps I could do an hour on the elliptical at a comfortable (yet cardio) pace versus a 20 minute wipe-you-out run. At this point I just feel trying different things to see what happens seems rational before taking the jumpt to O2. Obviously O2 at 83-87 with exercise is unnacceptable, so I won't continue what I'm doing.

My biggest issue is that I really would like someone to do an accurate exercise study to see what happens to my heart and lungs during an entire run and entire elliptical and have someone sit down and tell me what is good for me with CF. I don't even know if this is possible, but I don't know how much I trust my monitor. I mean, yesterday when I was on the elliptical, it kept my HR at exactly 174 from the warm up to the cool down, which makes no sense since I bumped up and down the intensity and speed and with a run I fluctuate a lot with intensity. This is frustrating.

And, yes, if I want to keep on with my intense run I will certainly get O2... don't worry. I just don't know if THAT'S the better thing to do (become where I need the O2 to keep up my run) or if its still just as beneficial to do the elliptical with my OWN O2 doing just fine. Urgh.

Anyway... I will keep ya'll posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
05-31-2007, 06:40 PM
Yes, I've actually read articles in magazines and online that the length of exercise at a good aerobic level is much more beneficial than a very intense exercise for a shorter amount of time. My guess is I could last on the elliptical for quite awhile at the level I was at yesterday. So, perhaps I could do an hour on the elliptical at a comfortable (yet cardio) pace versus a 20 minute wipe-you-out run. At this point I just feel trying different things to see what happens seems rational before taking the jumpt to O2. Obviously O2 at 83-87 with exercise is unnacceptable, so I won't continue what I'm doing.

My biggest issue is that I really would like someone to do an accurate exercise study to see what happens to my heart and lungs during an entire run and entire elliptical and have someone sit down and tell me what is good for me with CF. I don't even know if this is possible, but I don't know how much I trust my monitor. I mean, yesterday when I was on the elliptical, it kept my HR at exactly 174 from the warm up to the cool down, which makes no sense since I bumped up and down the intensity and speed and with a run I fluctuate a lot with intensity. This is frustrating.

And, yes, if I want to keep on with my intense run I will certainly get O2... don't worry. I just don't know if THAT'S the better thing to do (become where I need the O2 to keep up my run) or if its still just as beneficial to do the elliptical with my OWN O2 doing just fine. Urgh.

Anyway... I will keep ya'll posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">