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Faust
08-12-2007, 05:35 PM
Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.


My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.

Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).

I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.


It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.

Faust
08-12-2007, 05:35 PM
Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.


My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.

Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).

I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.


It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.

Faust
08-12-2007, 05:35 PM
Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.


My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.

Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).

I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.


It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.

Faust
08-12-2007, 05:35 PM
Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.


My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.

Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).

I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.


It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.

Faust
08-12-2007, 05:35 PM
Ok here is the deal. I have high PFT's (99's, the smalls airways were around 80-85%, etc). I'm on hypertonic, albuterol, colistimethate (the generic of colistin), and pulmozyme. I had my first bleed when I was maybe 20 or 21, and they have generally been with me chronically since then (i'm now 36). I have always been compliant with my nebs, and used to do the occasional vest when I felt a little chunky (maybe once a week). Now I do all my nebs, exercise religiously (weight training, and then tons of walking at work), and always do my vest 2 times a day during the week, with maybe one missed on the weekend as a break from it all.


My bleeds usually follow a pattern. I could feel fine, have been out of smoky areas for a long time (big priority of mine now), and even hadn't been drinking at all (on weekends ill have some beers). I'll finish my nebs up, and then go to lay down in bed. And then WHAMO, a gnarly bleed. It's extremely frustrating, and whenever I bring it up to my doc (not that often, i realize bleeds are just generally part of having CF so I deal with it) when it starts to appear to be chronic (several in the same month), his response is to just put me on some type of oral antibiotic, which of course doesn't really ever seem to work. The bleeds also occur sometimes when I quickly exert myself, like say if i'm doing nothing and I take off running fast, biking quick, etc. The last part makes sense, if my lungs structure is compromised, quickly increased blood pressure/pulse would "blow open" a small vein somewhere. But why when I lay down? That makes no sense at all to me. I'm wondering if the bleeds are associated with one of my nebs, and I just haven't picked up on it yet. Of course if I bled RIGHT after I did a particular neb, i'd figure it out, but that isn't the case.

Does hypertonic (the newest thing I have been on) have a bad rap for causing bleeds? I have heard some people say pulmozyme made them bleed, but I have been on pulmo for a long time, and I have had bleeds when I didn't take it (very rare, but it has happened). And no, this has been happening way before I started investigating supplements, and this has also been an issue when I was on a constant dose of vitamin K (though didn't last as long).

I'm kind of at the end of my rope frustration wise, and I plan on talking to my doc's people on monday. I want to know if there is another avenue I should look down. Do I ask for a possible MRI? Do they do DYE tests to see whats up with exertion (makes sense to me)? I know about embolizations, and I want to truely avoid that till it is a life and death situation (it almost was once but it stopped). I also know about lobectomies, and that is even less of a thing I want to do than a embolization. This whole problem is really pissing me off. It's put a big blockade in my sex life (lady doesnt want to trigger a bleed), things I used to do sporadically I have to think twice about (high exertion), and to be honest, this is the single issue weighing on my mind that is stopping me from properly pursuing a career in law enforcement.


It makes it all the worse when I know I am extremely healthy, and have apparently very healthy lungs, lift a ton of weight, have good weight, and generally doing everything right, and doing everything i'm told to. I understand bleeds happen regardless, but they shouldn't be chronic and so life changing as mine are. Any suggestions would be greatly welcomed, especially suggestions on where to go with my doc. Oddly enough I never feel real bad after a bleed. It feels more like a cleansing moment that my body wanted to get rid of something, like a pulmonary quick menstral cycle or something.

Wheezie
08-12-2007, 07:36 PM
I can see how that must be so frustrating for you, especially when you are so healthy in every other way. I wish I had some good advice or suggestions for ya. I would definitely be more aggressive with my doc if I were you - if this is a persistent problem and antibiotics have not worked the billions of times you've tried them before, then ask your doc what ALL possible treatment options are available and really research them - find out if the risks outweigh the benefits for YOU. At least the bleeds don't make you feel really bad - that's a good thing, right? Good luck; I hope someone else on here will have better suggestions for ya <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Wheezie
08-12-2007, 07:36 PM
I can see how that must be so frustrating for you, especially when you are so healthy in every other way. I wish I had some good advice or suggestions for ya. I would definitely be more aggressive with my doc if I were you - if this is a persistent problem and antibiotics have not worked the billions of times you've tried them before, then ask your doc what ALL possible treatment options are available and really research them - find out if the risks outweigh the benefits for YOU. At least the bleeds don't make you feel really bad - that's a good thing, right? Good luck; I hope someone else on here will have better suggestions for ya <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Wheezie
08-12-2007, 07:36 PM
I can see how that must be so frustrating for you, especially when you are so healthy in every other way. I wish I had some good advice or suggestions for ya. I would definitely be more aggressive with my doc if I were you - if this is a persistent problem and antibiotics have not worked the billions of times you've tried them before, then ask your doc what ALL possible treatment options are available and really research them - find out if the risks outweigh the benefits for YOU. At least the bleeds don't make you feel really bad - that's a good thing, right? Good luck; I hope someone else on here will have better suggestions for ya <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Wheezie
08-12-2007, 07:36 PM
I can see how that must be so frustrating for you, especially when you are so healthy in every other way. I wish I had some good advice or suggestions for ya. I would definitely be more aggressive with my doc if I were you - if this is a persistent problem and antibiotics have not worked the billions of times you've tried them before, then ask your doc what ALL possible treatment options are available and really research them - find out if the risks outweigh the benefits for YOU. At least the bleeds don't make you feel really bad - that's a good thing, right? Good luck; I hope someone else on here will have better suggestions for ya <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Wheezie
08-12-2007, 07:36 PM
I can see how that must be so frustrating for you, especially when you are so healthy in every other way. I wish I had some good advice or suggestions for ya. I would definitely be more aggressive with my doc if I were you - if this is a persistent problem and antibiotics have not worked the billions of times you've tried them before, then ask your doc what ALL possible treatment options are available and really research them - find out if the risks outweigh the benefits for YOU. At least the bleeds don't make you feel really bad - that's a good thing, right? Good luck; I hope someone else on here will have better suggestions for ya <img src="i/expressions/face-icon-small-tongue.gif" border="0">

moxie1
08-12-2007, 07:44 PM
Sean,

I've had the same problems over the years---the only thing I can say is the Pulmozyme really made me bleed. Thing is, my first bleed was before I started Pulmozyme too. Back then, I was on mucomyst which can irritate the lungs so who knows?.

However, Pulmozyme definitely made things worse. My bleeds were getting more and more frequent with increasing severity (even with emoblizations). Since stopping the Pulmozyme, they cut out. I can lay flat on my back without a problem whereas before that was a trigger. I still try to avoid that position since it scares me, but sometimes you can't help it. Some people have tried using L-lysine. Maybe you can look into that.

moxie1
08-12-2007, 07:44 PM
Sean,

I've had the same problems over the years---the only thing I can say is the Pulmozyme really made me bleed. Thing is, my first bleed was before I started Pulmozyme too. Back then, I was on mucomyst which can irritate the lungs so who knows?.

However, Pulmozyme definitely made things worse. My bleeds were getting more and more frequent with increasing severity (even with emoblizations). Since stopping the Pulmozyme, they cut out. I can lay flat on my back without a problem whereas before that was a trigger. I still try to avoid that position since it scares me, but sometimes you can't help it. Some people have tried using L-lysine. Maybe you can look into that.

moxie1
08-12-2007, 07:44 PM
Sean,

I've had the same problems over the years---the only thing I can say is the Pulmozyme really made me bleed. Thing is, my first bleed was before I started Pulmozyme too. Back then, I was on mucomyst which can irritate the lungs so who knows?.

However, Pulmozyme definitely made things worse. My bleeds were getting more and more frequent with increasing severity (even with emoblizations). Since stopping the Pulmozyme, they cut out. I can lay flat on my back without a problem whereas before that was a trigger. I still try to avoid that position since it scares me, but sometimes you can't help it. Some people have tried using L-lysine. Maybe you can look into that.

moxie1
08-12-2007, 07:44 PM
Sean,

I've had the same problems over the years---the only thing I can say is the Pulmozyme really made me bleed. Thing is, my first bleed was before I started Pulmozyme too. Back then, I was on mucomyst which can irritate the lungs so who knows?.

However, Pulmozyme definitely made things worse. My bleeds were getting more and more frequent with increasing severity (even with emoblizations). Since stopping the Pulmozyme, they cut out. I can lay flat on my back without a problem whereas before that was a trigger. I still try to avoid that position since it scares me, but sometimes you can't help it. Some people have tried using L-lysine. Maybe you can look into that.

moxie1
08-12-2007, 07:44 PM
Sean,

I've had the same problems over the years---the only thing I can say is the Pulmozyme really made me bleed. Thing is, my first bleed was before I started Pulmozyme too. Back then, I was on mucomyst which can irritate the lungs so who knows?.

However, Pulmozyme definitely made things worse. My bleeds were getting more and more frequent with increasing severity (even with emoblizations). Since stopping the Pulmozyme, they cut out. I can lay flat on my back without a problem whereas before that was a trigger. I still try to avoid that position since it scares me, but sometimes you can't help it. Some people have tried using L-lysine. Maybe you can look into that.

Jem
08-12-2007, 10:42 PM
I feel your pain!

Here is my story with hemoptysis....Many times it seems like there is no rhyme or reason to my hemoptysis. I had my first of many bleeds when I was 18. My boyfriend at the time, now my husband, witnessed the pretty sight of me coughing up a ton of blood in the kitchen sink. Since it became chronic, the following year they took out my left upper lung. At this time I was only diagnosed with bronchiectasis. My sweat test was in the high normal range. This was many years ago and they didn't know as much about cf has they do now. I was tested for it but their tests and my overall good health suggested to them otherwise so I was diagnosed with unexplained bronchiectasis. I was a student studying x-ray technology at the time.

Having my left upper lung removed alleviated the problem for a few years but then bleeding reoccurred. I would just go on oral antibiotics at those times. I went on to have 3 children. I did have a major scary bleed when I was 6 weeks pregnant with my first but then took antibiotics prophylacticly and was fine throughout all three pregnancies.

With better testing I was finally diagnosed with cf in my 30's and By 40 I had to have the rest of my left lung removed because of severe bleeding over a two year period. Embolizations just didn't seem to work so after the 5th time they recommended surgery.

It was the best thing for me. My health greatly improved. It is 8 years now and I have had only minor bleeds...2 teaspoons or less maybe 2-3 times a year for the last 4 years. My last bleed was in November (9 months ago-YAY!).

I do not attribute pulmozyme to my bleeds at all because I did not start pulmozyme till after my last surgery. I believe Hypertonic Saline has been a God sent in my life as it has brought up my FEV from 41 to 48 over 18 months which is what it was after they took out the rest of my left lung.

Hemoptysis sucks...it is very scary and if feels so frustrating because it seems that no matter what you do it just doesn't really help. I could have a very active day, feel great, then hop in bed, lie down and boom! A bleed would happen. I got used to sleeping with a ton of pillows out of fear but after my last surgery I can sleep pretty flat now especially after doing my nightly HS/vest treatment.

Gosh, it was really scary when having relations with my husband would bring on a bleed..."Honey please don't kill me tonight" would be my standard joke!! You have to have a sense of humor about these things. Thankfully bleeding has not happened since my last surgery.

When I have a minor bleed (which I do find if it happens will usually happen several days before my menstrual cycle) I go on an oral dose of Levaquin for 3 weeks regardless. I also have extra vitamin K on hand that I can take and I always call my doctor just to let him know what is going on. I skip the vest and pulmozyme, & HS for 24 hours as well.

I hope others will share their bleeding stories as well. We can all learn from each other and I hope too Sean that you find what works for you. All you can do is do the best you can to take good care of yourself then put yourself in the doctor's hands and see what they might suggest. Let us know how it goes.

Jem
08-12-2007, 10:42 PM
I feel your pain!

Here is my story with hemoptysis....Many times it seems like there is no rhyme or reason to my hemoptysis. I had my first of many bleeds when I was 18. My boyfriend at the time, now my husband, witnessed the pretty sight of me coughing up a ton of blood in the kitchen sink. Since it became chronic, the following year they took out my left upper lung. At this time I was only diagnosed with bronchiectasis. My sweat test was in the high normal range. This was many years ago and they didn't know as much about cf has they do now. I was tested for it but their tests and my overall good health suggested to them otherwise so I was diagnosed with unexplained bronchiectasis. I was a student studying x-ray technology at the time.

Having my left upper lung removed alleviated the problem for a few years but then bleeding reoccurred. I would just go on oral antibiotics at those times. I went on to have 3 children. I did have a major scary bleed when I was 6 weeks pregnant with my first but then took antibiotics prophylacticly and was fine throughout all three pregnancies.

With better testing I was finally diagnosed with cf in my 30's and By 40 I had to have the rest of my left lung removed because of severe bleeding over a two year period. Embolizations just didn't seem to work so after the 5th time they recommended surgery.

It was the best thing for me. My health greatly improved. It is 8 years now and I have had only minor bleeds...2 teaspoons or less maybe 2-3 times a year for the last 4 years. My last bleed was in November (9 months ago-YAY!).

I do not attribute pulmozyme to my bleeds at all because I did not start pulmozyme till after my last surgery. I believe Hypertonic Saline has been a God sent in my life as it has brought up my FEV from 41 to 48 over 18 months which is what it was after they took out the rest of my left lung.

Hemoptysis sucks...it is very scary and if feels so frustrating because it seems that no matter what you do it just doesn't really help. I could have a very active day, feel great, then hop in bed, lie down and boom! A bleed would happen. I got used to sleeping with a ton of pillows out of fear but after my last surgery I can sleep pretty flat now especially after doing my nightly HS/vest treatment.

Gosh, it was really scary when having relations with my husband would bring on a bleed..."Honey please don't kill me tonight" would be my standard joke!! You have to have a sense of humor about these things. Thankfully bleeding has not happened since my last surgery.

When I have a minor bleed (which I do find if it happens will usually happen several days before my menstrual cycle) I go on an oral dose of Levaquin for 3 weeks regardless. I also have extra vitamin K on hand that I can take and I always call my doctor just to let him know what is going on. I skip the vest and pulmozyme, & HS for 24 hours as well.

I hope others will share their bleeding stories as well. We can all learn from each other and I hope too Sean that you find what works for you. All you can do is do the best you can to take good care of yourself then put yourself in the doctor's hands and see what they might suggest. Let us know how it goes.

Jem
08-12-2007, 10:42 PM
I feel your pain!

Here is my story with hemoptysis....Many times it seems like there is no rhyme or reason to my hemoptysis. I had my first of many bleeds when I was 18. My boyfriend at the time, now my husband, witnessed the pretty sight of me coughing up a ton of blood in the kitchen sink. Since it became chronic, the following year they took out my left upper lung. At this time I was only diagnosed with bronchiectasis. My sweat test was in the high normal range. This was many years ago and they didn't know as much about cf has they do now. I was tested for it but their tests and my overall good health suggested to them otherwise so I was diagnosed with unexplained bronchiectasis. I was a student studying x-ray technology at the time.

Having my left upper lung removed alleviated the problem for a few years but then bleeding reoccurred. I would just go on oral antibiotics at those times. I went on to have 3 children. I did have a major scary bleed when I was 6 weeks pregnant with my first but then took antibiotics prophylacticly and was fine throughout all three pregnancies.

With better testing I was finally diagnosed with cf in my 30's and By 40 I had to have the rest of my left lung removed because of severe bleeding over a two year period. Embolizations just didn't seem to work so after the 5th time they recommended surgery.

It was the best thing for me. My health greatly improved. It is 8 years now and I have had only minor bleeds...2 teaspoons or less maybe 2-3 times a year for the last 4 years. My last bleed was in November (9 months ago-YAY!).

I do not attribute pulmozyme to my bleeds at all because I did not start pulmozyme till after my last surgery. I believe Hypertonic Saline has been a God sent in my life as it has brought up my FEV from 41 to 48 over 18 months which is what it was after they took out the rest of my left lung.

Hemoptysis sucks...it is very scary and if feels so frustrating because it seems that no matter what you do it just doesn't really help. I could have a very active day, feel great, then hop in bed, lie down and boom! A bleed would happen. I got used to sleeping with a ton of pillows out of fear but after my last surgery I can sleep pretty flat now especially after doing my nightly HS/vest treatment.

Gosh, it was really scary when having relations with my husband would bring on a bleed..."Honey please don't kill me tonight" would be my standard joke!! You have to have a sense of humor about these things. Thankfully bleeding has not happened since my last surgery.

When I have a minor bleed (which I do find if it happens will usually happen several days before my menstrual cycle) I go on an oral dose of Levaquin for 3 weeks regardless. I also have extra vitamin K on hand that I can take and I always call my doctor just to let him know what is going on. I skip the vest and pulmozyme, & HS for 24 hours as well.

I hope others will share their bleeding stories as well. We can all learn from each other and I hope too Sean that you find what works for you. All you can do is do the best you can to take good care of yourself then put yourself in the doctor's hands and see what they might suggest. Let us know how it goes.

Jem
08-12-2007, 10:42 PM
I feel your pain!

Here is my story with hemoptysis....Many times it seems like there is no rhyme or reason to my hemoptysis. I had my first of many bleeds when I was 18. My boyfriend at the time, now my husband, witnessed the pretty sight of me coughing up a ton of blood in the kitchen sink. Since it became chronic, the following year they took out my left upper lung. At this time I was only diagnosed with bronchiectasis. My sweat test was in the high normal range. This was many years ago and they didn't know as much about cf has they do now. I was tested for it but their tests and my overall good health suggested to them otherwise so I was diagnosed with unexplained bronchiectasis. I was a student studying x-ray technology at the time.

Having my left upper lung removed alleviated the problem for a few years but then bleeding reoccurred. I would just go on oral antibiotics at those times. I went on to have 3 children. I did have a major scary bleed when I was 6 weeks pregnant with my first but then took antibiotics prophylacticly and was fine throughout all three pregnancies.

With better testing I was finally diagnosed with cf in my 30's and By 40 I had to have the rest of my left lung removed because of severe bleeding over a two year period. Embolizations just didn't seem to work so after the 5th time they recommended surgery.

It was the best thing for me. My health greatly improved. It is 8 years now and I have had only minor bleeds...2 teaspoons or less maybe 2-3 times a year for the last 4 years. My last bleed was in November (9 months ago-YAY!).

I do not attribute pulmozyme to my bleeds at all because I did not start pulmozyme till after my last surgery. I believe Hypertonic Saline has been a God sent in my life as it has brought up my FEV from 41 to 48 over 18 months which is what it was after they took out the rest of my left lung.

Hemoptysis sucks...it is very scary and if feels so frustrating because it seems that no matter what you do it just doesn't really help. I could have a very active day, feel great, then hop in bed, lie down and boom! A bleed would happen. I got used to sleeping with a ton of pillows out of fear but after my last surgery I can sleep pretty flat now especially after doing my nightly HS/vest treatment.

Gosh, it was really scary when having relations with my husband would bring on a bleed..."Honey please don't kill me tonight" would be my standard joke!! You have to have a sense of humor about these things. Thankfully bleeding has not happened since my last surgery.

When I have a minor bleed (which I do find if it happens will usually happen several days before my menstrual cycle) I go on an oral dose of Levaquin for 3 weeks regardless. I also have extra vitamin K on hand that I can take and I always call my doctor just to let him know what is going on. I skip the vest and pulmozyme, & HS for 24 hours as well.

I hope others will share their bleeding stories as well. We can all learn from each other and I hope too Sean that you find what works for you. All you can do is do the best you can to take good care of yourself then put yourself in the doctor's hands and see what they might suggest. Let us know how it goes.

Jem
08-12-2007, 10:42 PM
I feel your pain!

Here is my story with hemoptysis....Many times it seems like there is no rhyme or reason to my hemoptysis. I had my first of many bleeds when I was 18. My boyfriend at the time, now my husband, witnessed the pretty sight of me coughing up a ton of blood in the kitchen sink. Since it became chronic, the following year they took out my left upper lung. At this time I was only diagnosed with bronchiectasis. My sweat test was in the high normal range. This was many years ago and they didn't know as much about cf has they do now. I was tested for it but their tests and my overall good health suggested to them otherwise so I was diagnosed with unexplained bronchiectasis. I was a student studying x-ray technology at the time.

Having my left upper lung removed alleviated the problem for a few years but then bleeding reoccurred. I would just go on oral antibiotics at those times. I went on to have 3 children. I did have a major scary bleed when I was 6 weeks pregnant with my first but then took antibiotics prophylacticly and was fine throughout all three pregnancies.

With better testing I was finally diagnosed with cf in my 30's and By 40 I had to have the rest of my left lung removed because of severe bleeding over a two year period. Embolizations just didn't seem to work so after the 5th time they recommended surgery.

It was the best thing for me. My health greatly improved. It is 8 years now and I have had only minor bleeds...2 teaspoons or less maybe 2-3 times a year for the last 4 years. My last bleed was in November (9 months ago-YAY!).

I do not attribute pulmozyme to my bleeds at all because I did not start pulmozyme till after my last surgery. I believe Hypertonic Saline has been a God sent in my life as it has brought up my FEV from 41 to 48 over 18 months which is what it was after they took out the rest of my left lung.

Hemoptysis sucks...it is very scary and if feels so frustrating because it seems that no matter what you do it just doesn't really help. I could have a very active day, feel great, then hop in bed, lie down and boom! A bleed would happen. I got used to sleeping with a ton of pillows out of fear but after my last surgery I can sleep pretty flat now especially after doing my nightly HS/vest treatment.

Gosh, it was really scary when having relations with my husband would bring on a bleed..."Honey please don't kill me tonight" would be my standard joke!! You have to have a sense of humor about these things. Thankfully bleeding has not happened since my last surgery.

When I have a minor bleed (which I do find if it happens will usually happen several days before my menstrual cycle) I go on an oral dose of Levaquin for 3 weeks regardless. I also have extra vitamin K on hand that I can take and I always call my doctor just to let him know what is going on. I skip the vest and pulmozyme, & HS for 24 hours as well.

I hope others will share their bleeding stories as well. We can all learn from each other and I hope too Sean that you find what works for you. All you can do is do the best you can to take good care of yourself then put yourself in the doctor's hands and see what they might suggest. Let us know how it goes.

rockingdog
08-13-2007, 02:51 AM
Faust,

I feel for you. Right now, I'm going through something very similar. I am feeling great. I had great PFTs on Friday and today, wham, coughed up blood. It doesn't make sense. I, like Moxie1, was on Pulmozyme for years and had more bleeds on it than off it. I have the same problem when I sleep, which is why I've slept upright on the couch for 18 months.

I'm 45 and I know I will never understand the complexities of this disease. Please keep posted on what the docs say. It's always interesting to see what strategies are out there for overcoming bleeding.

I wonder if oral steroids are ever prescribed for bleeding? Has anyone heard of docs doing that?

Dog

rockingdog
08-13-2007, 02:51 AM
Faust,

I feel for you. Right now, I'm going through something very similar. I am feeling great. I had great PFTs on Friday and today, wham, coughed up blood. It doesn't make sense. I, like Moxie1, was on Pulmozyme for years and had more bleeds on it than off it. I have the same problem when I sleep, which is why I've slept upright on the couch for 18 months.

I'm 45 and I know I will never understand the complexities of this disease. Please keep posted on what the docs say. It's always interesting to see what strategies are out there for overcoming bleeding.

I wonder if oral steroids are ever prescribed for bleeding? Has anyone heard of docs doing that?

Dog

rockingdog
08-13-2007, 02:51 AM
Faust,

I feel for you. Right now, I'm going through something very similar. I am feeling great. I had great PFTs on Friday and today, wham, coughed up blood. It doesn't make sense. I, like Moxie1, was on Pulmozyme for years and had more bleeds on it than off it. I have the same problem when I sleep, which is why I've slept upright on the couch for 18 months.

I'm 45 and I know I will never understand the complexities of this disease. Please keep posted on what the docs say. It's always interesting to see what strategies are out there for overcoming bleeding.

I wonder if oral steroids are ever prescribed for bleeding? Has anyone heard of docs doing that?

Dog

rockingdog
08-13-2007, 02:51 AM
Faust,

I feel for you. Right now, I'm going through something very similar. I am feeling great. I had great PFTs on Friday and today, wham, coughed up blood. It doesn't make sense. I, like Moxie1, was on Pulmozyme for years and had more bleeds on it than off it. I have the same problem when I sleep, which is why I've slept upright on the couch for 18 months.

I'm 45 and I know I will never understand the complexities of this disease. Please keep posted on what the docs say. It's always interesting to see what strategies are out there for overcoming bleeding.

I wonder if oral steroids are ever prescribed for bleeding? Has anyone heard of docs doing that?

Dog

rockingdog
08-13-2007, 02:51 AM
Faust,

I feel for you. Right now, I'm going through something very similar. I am feeling great. I had great PFTs on Friday and today, wham, coughed up blood. It doesn't make sense. I, like Moxie1, was on Pulmozyme for years and had more bleeds on it than off it. I have the same problem when I sleep, which is why I've slept upright on the couch for 18 months.

I'm 45 and I know I will never understand the complexities of this disease. Please keep posted on what the docs say. It's always interesting to see what strategies are out there for overcoming bleeding.

I wonder if oral steroids are ever prescribed for bleeding? Has anyone heard of docs doing that?

Dog

Faust
08-13-2007, 04:09 AM
Thanks guys. It really does piss me off. Here I am 5'11, 200lbs, very much in shape, high PFT's, and I know if it wasn't for bleeding, I could do some real crazy stuff and get jobs in very crazy fields. But no. Before I went out for detention deputy, and I really tore up the physical abilities course. The cut off time was 6:20 minutes. There were tons of people who were immediately disqualified due to blood pressure/pulse/weight etc. Some very in shape people made it half way and then called it quits. I ran my course with more of the knowledge that it was a marathon, and not a sprint. Sure there were of course the ultra very young, ultra healthy gung ho 20 year olds who hauled ass through the whole thing like they were trying to break a land speed record, and finished with incredible times...But i was just wanting to finish it, and not have my time be so out of whack with everyone elses who finished it. Guess what? With a ceiling of 6:20 minutes, I finished @ 4:20, and the last 30 or so seconds was due to me knowing I had a crapload of time left (I set my stop watch with my instructor who gave the test), and I fast walked the last several hundred yards of the course. I ended up getting a "Good job, very good time" from my instructor. And when I was done, I was VERY far from exhausted. I could have easily done it 2 or 3 more times.


This hemoptysis ***** is complete BS though. Here I am, I could be working as a fireman, for a wellknown firehouse physical abilities wise, but I can't because bursts of physical exertion, can mean i'm coughing up pure blood in front of someone I don't want to.

I have heard several angles from other CF patients saying how they feel it is pulmozyme. I have also heard some of those same people say that when they stopped pulmozyme, their lung function went way down, even though their bleeds stopped. Where is the comfy trade off? Should I stop pulmozyme to avoid possible (again, POSSIBLE) related bleeds, and then have my overall lung function go down due to increased thickness in my sputum clinging in my lungs? I know I hate where i am now. I know that even if I had CF, but no bleeds, the military would take me in (as long as I lied about CF) and let me enlist due to my physical state. My god I can do 80+ push ups in a row, good amount of sit ups, and pretty much fight at the drop of a hat if needed. But bleeding issues are stopping me from being exactly what I want to be in the end, which is a certified LEO, and a dad. I'm not willing to 100% call it quits and be on 100% disability just yet. Due to my supplements and care regimen, i'm more than able to hang around for quite a long time. But i'm not fully able to apply my education and experience where I want to apply it due to some weird gremlin who keeps throwing his wrenches in the cogs of my life.


If they (care workers) were able to find the culprit, and told me they could remove the culprit, even if it meant something as crazy as removing a large part of my lung, i'd say yes please. because the worst thing to happen to you, is something that erodes you, messes you up, screws up your entire life, and you have zero idea who/what/why is doing it. That is all I want, an identification as to what is kicking my ass. Give me that and i'll be happy.

Faust
08-13-2007, 04:09 AM
Thanks guys. It really does piss me off. Here I am 5'11, 200lbs, very much in shape, high PFT's, and I know if it wasn't for bleeding, I could do some real crazy stuff and get jobs in very crazy fields. But no. Before I went out for detention deputy, and I really tore up the physical abilities course. The cut off time was 6:20 minutes. There were tons of people who were immediately disqualified due to blood pressure/pulse/weight etc. Some very in shape people made it half way and then called it quits. I ran my course with more of the knowledge that it was a marathon, and not a sprint. Sure there were of course the ultra very young, ultra healthy gung ho 20 year olds who hauled ass through the whole thing like they were trying to break a land speed record, and finished with incredible times...But i was just wanting to finish it, and not have my time be so out of whack with everyone elses who finished it. Guess what? With a ceiling of 6:20 minutes, I finished @ 4:20, and the last 30 or so seconds was due to me knowing I had a crapload of time left (I set my stop watch with my instructor who gave the test), and I fast walked the last several hundred yards of the course. I ended up getting a "Good job, very good time" from my instructor. And when I was done, I was VERY far from exhausted. I could have easily done it 2 or 3 more times.


This hemoptysis ***** is complete BS though. Here I am, I could be working as a fireman, for a wellknown firehouse physical abilities wise, but I can't because bursts of physical exertion, can mean i'm coughing up pure blood in front of someone I don't want to.

I have heard several angles from other CF patients saying how they feel it is pulmozyme. I have also heard some of those same people say that when they stopped pulmozyme, their lung function went way down, even though their bleeds stopped. Where is the comfy trade off? Should I stop pulmozyme to avoid possible (again, POSSIBLE) related bleeds, and then have my overall lung function go down due to increased thickness in my sputum clinging in my lungs? I know I hate where i am now. I know that even if I had CF, but no bleeds, the military would take me in (as long as I lied about CF) and let me enlist due to my physical state. My god I can do 80+ push ups in a row, good amount of sit ups, and pretty much fight at the drop of a hat if needed. But bleeding issues are stopping me from being exactly what I want to be in the end, which is a certified LEO, and a dad. I'm not willing to 100% call it quits and be on 100% disability just yet. Due to my supplements and care regimen, i'm more than able to hang around for quite a long time. But i'm not fully able to apply my education and experience where I want to apply it due to some weird gremlin who keeps throwing his wrenches in the cogs of my life.


If they (care workers) were able to find the culprit, and told me they could remove the culprit, even if it meant something as crazy as removing a large part of my lung, i'd say yes please. because the worst thing to happen to you, is something that erodes you, messes you up, screws up your entire life, and you have zero idea who/what/why is doing it. That is all I want, an identification as to what is kicking my ass. Give me that and i'll be happy.

Faust
08-13-2007, 04:09 AM
Thanks guys. It really does piss me off. Here I am 5'11, 200lbs, very much in shape, high PFT's, and I know if it wasn't for bleeding, I could do some real crazy stuff and get jobs in very crazy fields. But no. Before I went out for detention deputy, and I really tore up the physical abilities course. The cut off time was 6:20 minutes. There were tons of people who were immediately disqualified due to blood pressure/pulse/weight etc. Some very in shape people made it half way and then called it quits. I ran my course with more of the knowledge that it was a marathon, and not a sprint. Sure there were of course the ultra very young, ultra healthy gung ho 20 year olds who hauled ass through the whole thing like they were trying to break a land speed record, and finished with incredible times...But i was just wanting to finish it, and not have my time be so out of whack with everyone elses who finished it. Guess what? With a ceiling of 6:20 minutes, I finished @ 4:20, and the last 30 or so seconds was due to me knowing I had a crapload of time left (I set my stop watch with my instructor who gave the test), and I fast walked the last several hundred yards of the course. I ended up getting a "Good job, very good time" from my instructor. And when I was done, I was VERY far from exhausted. I could have easily done it 2 or 3 more times.


This hemoptysis ***** is complete BS though. Here I am, I could be working as a fireman, for a wellknown firehouse physical abilities wise, but I can't because bursts of physical exertion, can mean i'm coughing up pure blood in front of someone I don't want to.

I have heard several angles from other CF patients saying how they feel it is pulmozyme. I have also heard some of those same people say that when they stopped pulmozyme, their lung function went way down, even though their bleeds stopped. Where is the comfy trade off? Should I stop pulmozyme to avoid possible (again, POSSIBLE) related bleeds, and then have my overall lung function go down due to increased thickness in my sputum clinging in my lungs? I know I hate where i am now. I know that even if I had CF, but no bleeds, the military would take me in (as long as I lied about CF) and let me enlist due to my physical state. My god I can do 80+ push ups in a row, good amount of sit ups, and pretty much fight at the drop of a hat if needed. But bleeding issues are stopping me from being exactly what I want to be in the end, which is a certified LEO, and a dad. I'm not willing to 100% call it quits and be on 100% disability just yet. Due to my supplements and care regimen, i'm more than able to hang around for quite a long time. But i'm not fully able to apply my education and experience where I want to apply it due to some weird gremlin who keeps throwing his wrenches in the cogs of my life.


If they (care workers) were able to find the culprit, and told me they could remove the culprit, even if it meant something as crazy as removing a large part of my lung, i'd say yes please. because the worst thing to happen to you, is something that erodes you, messes you up, screws up your entire life, and you have zero idea who/what/why is doing it. That is all I want, an identification as to what is kicking my ass. Give me that and i'll be happy.

Faust
08-13-2007, 04:09 AM
Thanks guys. It really does piss me off. Here I am 5'11, 200lbs, very much in shape, high PFT's, and I know if it wasn't for bleeding, I could do some real crazy stuff and get jobs in very crazy fields. But no. Before I went out for detention deputy, and I really tore up the physical abilities course. The cut off time was 6:20 minutes. There were tons of people who were immediately disqualified due to blood pressure/pulse/weight etc. Some very in shape people made it half way and then called it quits. I ran my course with more of the knowledge that it was a marathon, and not a sprint. Sure there were of course the ultra very young, ultra healthy gung ho 20 year olds who hauled ass through the whole thing like they were trying to break a land speed record, and finished with incredible times...But i was just wanting to finish it, and not have my time be so out of whack with everyone elses who finished it. Guess what? With a ceiling of 6:20 minutes, I finished @ 4:20, and the last 30 or so seconds was due to me knowing I had a crapload of time left (I set my stop watch with my instructor who gave the test), and I fast walked the last several hundred yards of the course. I ended up getting a "Good job, very good time" from my instructor. And when I was done, I was VERY far from exhausted. I could have easily done it 2 or 3 more times.


This hemoptysis ***** is complete BS though. Here I am, I could be working as a fireman, for a wellknown firehouse physical abilities wise, but I can't because bursts of physical exertion, can mean i'm coughing up pure blood in front of someone I don't want to.

I have heard several angles from other CF patients saying how they feel it is pulmozyme. I have also heard some of those same people say that when they stopped pulmozyme, their lung function went way down, even though their bleeds stopped. Where is the comfy trade off? Should I stop pulmozyme to avoid possible (again, POSSIBLE) related bleeds, and then have my overall lung function go down due to increased thickness in my sputum clinging in my lungs? I know I hate where i am now. I know that even if I had CF, but no bleeds, the military would take me in (as long as I lied about CF) and let me enlist due to my physical state. My god I can do 80+ push ups in a row, good amount of sit ups, and pretty much fight at the drop of a hat if needed. But bleeding issues are stopping me from being exactly what I want to be in the end, which is a certified LEO, and a dad. I'm not willing to 100% call it quits and be on 100% disability just yet. Due to my supplements and care regimen, i'm more than able to hang around for quite a long time. But i'm not fully able to apply my education and experience where I want to apply it due to some weird gremlin who keeps throwing his wrenches in the cogs of my life.


If they (care workers) were able to find the culprit, and told me they could remove the culprit, even if it meant something as crazy as removing a large part of my lung, i'd say yes please. because the worst thing to happen to you, is something that erodes you, messes you up, screws up your entire life, and you have zero idea who/what/why is doing it. That is all I want, an identification as to what is kicking my ass. Give me that and i'll be happy.

Faust
08-13-2007, 04:09 AM
Thanks guys. It really does piss me off. Here I am 5'11, 200lbs, very much in shape, high PFT's, and I know if it wasn't for bleeding, I could do some real crazy stuff and get jobs in very crazy fields. But no. Before I went out for detention deputy, and I really tore up the physical abilities course. The cut off time was 6:20 minutes. There were tons of people who were immediately disqualified due to blood pressure/pulse/weight etc. Some very in shape people made it half way and then called it quits. I ran my course with more of the knowledge that it was a marathon, and not a sprint. Sure there were of course the ultra very young, ultra healthy gung ho 20 year olds who hauled ass through the whole thing like they were trying to break a land speed record, and finished with incredible times...But i was just wanting to finish it, and not have my time be so out of whack with everyone elses who finished it. Guess what? With a ceiling of 6:20 minutes, I finished @ 4:20, and the last 30 or so seconds was due to me knowing I had a crapload of time left (I set my stop watch with my instructor who gave the test), and I fast walked the last several hundred yards of the course. I ended up getting a "Good job, very good time" from my instructor. And when I was done, I was VERY far from exhausted. I could have easily done it 2 or 3 more times.


This hemoptysis ***** is complete BS though. Here I am, I could be working as a fireman, for a wellknown firehouse physical abilities wise, but I can't because bursts of physical exertion, can mean i'm coughing up pure blood in front of someone I don't want to.

I have heard several angles from other CF patients saying how they feel it is pulmozyme. I have also heard some of those same people say that when they stopped pulmozyme, their lung function went way down, even though their bleeds stopped. Where is the comfy trade off? Should I stop pulmozyme to avoid possible (again, POSSIBLE) related bleeds, and then have my overall lung function go down due to increased thickness in my sputum clinging in my lungs? I know I hate where i am now. I know that even if I had CF, but no bleeds, the military would take me in (as long as I lied about CF) and let me enlist due to my physical state. My god I can do 80+ push ups in a row, good amount of sit ups, and pretty much fight at the drop of a hat if needed. But bleeding issues are stopping me from being exactly what I want to be in the end, which is a certified LEO, and a dad. I'm not willing to 100% call it quits and be on 100% disability just yet. Due to my supplements and care regimen, i'm more than able to hang around for quite a long time. But i'm not fully able to apply my education and experience where I want to apply it due to some weird gremlin who keeps throwing his wrenches in the cogs of my life.


If they (care workers) were able to find the culprit, and told me they could remove the culprit, even if it meant something as crazy as removing a large part of my lung, i'd say yes please. because the worst thing to happen to you, is something that erodes you, messes you up, screws up your entire life, and you have zero idea who/what/why is doing it. That is all I want, an identification as to what is kicking my ass. Give me that and i'll be happy.

ElizabethlovesChris
08-13-2007, 04:09 AM
I'm so glad to see this topic & hope that everyone who has had the (awful) experience of dealing with chronic hemoptysis will respond because it is definitely something my husband and I have been dealing with.

Faust: Is your blood fresh & frothy & large enough to fill a small cup (not just a spoonful)? If so, that means it is coming straight from the arteries and is much more serious as opposed to just smaller amounts of blood streaking your sputum.

Brief history of my husband: (he was dx at birth) he had a big bleed in his teenage years which resulted in his first embolization. Years passed by and despite an overall decline in his PFTs, he worked out/weight lifting very constantly.
April 06: major bleed resulting in 2 embolizations
Aug 06: another major bleed resulting in 3 embolizations
July 07: (just a couple of weeks ago) another major bleed resulting in 2 embolizations

We asked his CF dr at our last visit what was the maximum # of embolizations he had ever seen/heard of before they simply couldn't stop the bleeding & the person died, and the doctor said 27 separate embolizations was the highest he had seen documented. Of course, we have personally known several Cfs who only had a couple of embolizations and still died because they simply couldn't stop the bleeding.

After numerous discussions with my husband we have been trying to determine the causes behind each of his big bleeds (of course, like many of you, he also has tons of streaking and small spots of blood in his regular sputum in all the months in between the big bleeds). We have come to a main conclusion: it is when he increases his interthoracic blood pressure that the bleeds occur. He was an avid weight lifter before all this happened and he has had to give it all up. He has tried even smmmmmmmmall amounts of weights just to try and keep his strength up and that was most likely what put us in the situation we had 2 weeks ago. Also, he has found a definite link (for him) between the more 'abrasive' treatments like HTS, inhaled Colistin, Pulmozyme and causing him to bleed.

The reason you are feeling the blood when you lay down is because it may have been leaking throughout the day(s) but when you are put in the supine position it starts to pool in certain parts of your lung (particularly on the right side). So, as you are doing those high intensity activities like weight lifting where your systolic blood pressure is raised so high, the arteries spring 'leaks' - your lung functions are awesomely high right now and you are probably at a point where you can prevent this from taking you down - but unfortunately it may mean sacrificing a piece of your life that you love - large weight lifting/working out. At least that is what we have found. Unfortunately, my husband's lung disease has progressed to where his PFTs are in the low 50s/low 40s, so he isn't really able to bounce back like he once could.

Our suggestions:
- get checked for any fungal infections (like Aspergillosus has been linked to increase bleeds)
- get checked for TB (just in case you have somehow contracted it - that would be a very easy test just to rule it out)
- hold off on your breathing treatments
- stop weight lifting; do cardio only (things that won't significantly raise your interthoracic pressure)
- if you stop bleeding over several weeks time, then slowly add one treatment back to see if those are irritating

Best of luck to all you guys -
Liz

ElizabethlovesChris
08-13-2007, 04:09 AM
I'm so glad to see this topic & hope that everyone who has had the (awful) experience of dealing with chronic hemoptysis will respond because it is definitely something my husband and I have been dealing with.

Faust: Is your blood fresh & frothy & large enough to fill a small cup (not just a spoonful)? If so, that means it is coming straight from the arteries and is much more serious as opposed to just smaller amounts of blood streaking your sputum.

Brief history of my husband: (he was dx at birth) he had a big bleed in his teenage years which resulted in his first embolization. Years passed by and despite an overall decline in his PFTs, he worked out/weight lifting very constantly.
April 06: major bleed resulting in 2 embolizations
Aug 06: another major bleed resulting in 3 embolizations
July 07: (just a couple of weeks ago) another major bleed resulting in 2 embolizations

We asked his CF dr at our last visit what was the maximum # of embolizations he had ever seen/heard of before they simply couldn't stop the bleeding & the person died, and the doctor said 27 separate embolizations was the highest he had seen documented. Of course, we have personally known several Cfs who only had a couple of embolizations and still died because they simply couldn't stop the bleeding.

After numerous discussions with my husband we have been trying to determine the causes behind each of his big bleeds (of course, like many of you, he also has tons of streaking and small spots of blood in his regular sputum in all the months in between the big bleeds). We have come to a main conclusion: it is when he increases his interthoracic blood pressure that the bleeds occur. He was an avid weight lifter before all this happened and he has had to give it all up. He has tried even smmmmmmmmall amounts of weights just to try and keep his strength up and that was most likely what put us in the situation we had 2 weeks ago. Also, he has found a definite link (for him) between the more 'abrasive' treatments like HTS, inhaled Colistin, Pulmozyme and causing him to bleed.

The reason you are feeling the blood when you lay down is because it may have been leaking throughout the day(s) but when you are put in the supine position it starts to pool in certain parts of your lung (particularly on the right side). So, as you are doing those high intensity activities like weight lifting where your systolic blood pressure is raised so high, the arteries spring 'leaks' - your lung functions are awesomely high right now and you are probably at a point where you can prevent this from taking you down - but unfortunately it may mean sacrificing a piece of your life that you love - large weight lifting/working out. At least that is what we have found. Unfortunately, my husband's lung disease has progressed to where his PFTs are in the low 50s/low 40s, so he isn't really able to bounce back like he once could.

Our suggestions:
- get checked for any fungal infections (like Aspergillosus has been linked to increase bleeds)
- get checked for TB (just in case you have somehow contracted it - that would be a very easy test just to rule it out)
- hold off on your breathing treatments
- stop weight lifting; do cardio only (things that won't significantly raise your interthoracic pressure)
- if you stop bleeding over several weeks time, then slowly add one treatment back to see if those are irritating

Best of luck to all you guys -
Liz

ElizabethlovesChris
08-13-2007, 04:09 AM
I'm so glad to see this topic & hope that everyone who has had the (awful) experience of dealing with chronic hemoptysis will respond because it is definitely something my husband and I have been dealing with.

Faust: Is your blood fresh & frothy & large enough to fill a small cup (not just a spoonful)? If so, that means it is coming straight from the arteries and is much more serious as opposed to just smaller amounts of blood streaking your sputum.

Brief history of my husband: (he was dx at birth) he had a big bleed in his teenage years which resulted in his first embolization. Years passed by and despite an overall decline in his PFTs, he worked out/weight lifting very constantly.
April 06: major bleed resulting in 2 embolizations
Aug 06: another major bleed resulting in 3 embolizations
July 07: (just a couple of weeks ago) another major bleed resulting in 2 embolizations

We asked his CF dr at our last visit what was the maximum # of embolizations he had ever seen/heard of before they simply couldn't stop the bleeding & the person died, and the doctor said 27 separate embolizations was the highest he had seen documented. Of course, we have personally known several Cfs who only had a couple of embolizations and still died because they simply couldn't stop the bleeding.

After numerous discussions with my husband we have been trying to determine the causes behind each of his big bleeds (of course, like many of you, he also has tons of streaking and small spots of blood in his regular sputum in all the months in between the big bleeds). We have come to a main conclusion: it is when he increases his interthoracic blood pressure that the bleeds occur. He was an avid weight lifter before all this happened and he has had to give it all up. He has tried even smmmmmmmmall amounts of weights just to try and keep his strength up and that was most likely what put us in the situation we had 2 weeks ago. Also, he has found a definite link (for him) between the more 'abrasive' treatments like HTS, inhaled Colistin, Pulmozyme and causing him to bleed.

The reason you are feeling the blood when you lay down is because it may have been leaking throughout the day(s) but when you are put in the supine position it starts to pool in certain parts of your lung (particularly on the right side). So, as you are doing those high intensity activities like weight lifting where your systolic blood pressure is raised so high, the arteries spring 'leaks' - your lung functions are awesomely high right now and you are probably at a point where you can prevent this from taking you down - but unfortunately it may mean sacrificing a piece of your life that you love - large weight lifting/working out. At least that is what we have found. Unfortunately, my husband's lung disease has progressed to where his PFTs are in the low 50s/low 40s, so he isn't really able to bounce back like he once could.

Our suggestions:
- get checked for any fungal infections (like Aspergillosus has been linked to increase bleeds)
- get checked for TB (just in case you have somehow contracted it - that would be a very easy test just to rule it out)
- hold off on your breathing treatments
- stop weight lifting; do cardio only (things that won't significantly raise your interthoracic pressure)
- if you stop bleeding over several weeks time, then slowly add one treatment back to see if those are irritating

Best of luck to all you guys -
Liz

ElizabethlovesChris
08-13-2007, 04:09 AM
I'm so glad to see this topic & hope that everyone who has had the (awful) experience of dealing with chronic hemoptysis will respond because it is definitely something my husband and I have been dealing with.

Faust: Is your blood fresh & frothy & large enough to fill a small cup (not just a spoonful)? If so, that means it is coming straight from the arteries and is much more serious as opposed to just smaller amounts of blood streaking your sputum.

Brief history of my husband: (he was dx at birth) he had a big bleed in his teenage years which resulted in his first embolization. Years passed by and despite an overall decline in his PFTs, he worked out/weight lifting very constantly.
April 06: major bleed resulting in 2 embolizations
Aug 06: another major bleed resulting in 3 embolizations
July 07: (just a couple of weeks ago) another major bleed resulting in 2 embolizations

We asked his CF dr at our last visit what was the maximum # of embolizations he had ever seen/heard of before they simply couldn't stop the bleeding & the person died, and the doctor said 27 separate embolizations was the highest he had seen documented. Of course, we have personally known several Cfs who only had a couple of embolizations and still died because they simply couldn't stop the bleeding.

After numerous discussions with my husband we have been trying to determine the causes behind each of his big bleeds (of course, like many of you, he also has tons of streaking and small spots of blood in his regular sputum in all the months in between the big bleeds). We have come to a main conclusion: it is when he increases his interthoracic blood pressure that the bleeds occur. He was an avid weight lifter before all this happened and he has had to give it all up. He has tried even smmmmmmmmall amounts of weights just to try and keep his strength up and that was most likely what put us in the situation we had 2 weeks ago. Also, he has found a definite link (for him) between the more 'abrasive' treatments like HTS, inhaled Colistin, Pulmozyme and causing him to bleed.

The reason you are feeling the blood when you lay down is because it may have been leaking throughout the day(s) but when you are put in the supine position it starts to pool in certain parts of your lung (particularly on the right side). So, as you are doing those high intensity activities like weight lifting where your systolic blood pressure is raised so high, the arteries spring 'leaks' - your lung functions are awesomely high right now and you are probably at a point where you can prevent this from taking you down - but unfortunately it may mean sacrificing a piece of your life that you love - large weight lifting/working out. At least that is what we have found. Unfortunately, my husband's lung disease has progressed to where his PFTs are in the low 50s/low 40s, so he isn't really able to bounce back like he once could.

Our suggestions:
- get checked for any fungal infections (like Aspergillosus has been linked to increase bleeds)
- get checked for TB (just in case you have somehow contracted it - that would be a very easy test just to rule it out)
- hold off on your breathing treatments
- stop weight lifting; do cardio only (things that won't significantly raise your interthoracic pressure)
- if you stop bleeding over several weeks time, then slowly add one treatment back to see if those are irritating

Best of luck to all you guys -
Liz

ElizabethlovesChris
08-13-2007, 04:09 AM
I'm so glad to see this topic & hope that everyone who has had the (awful) experience of dealing with chronic hemoptysis will respond because it is definitely something my husband and I have been dealing with.

Faust: Is your blood fresh & frothy & large enough to fill a small cup (not just a spoonful)? If so, that means it is coming straight from the arteries and is much more serious as opposed to just smaller amounts of blood streaking your sputum.

Brief history of my husband: (he was dx at birth) he had a big bleed in his teenage years which resulted in his first embolization. Years passed by and despite an overall decline in his PFTs, he worked out/weight lifting very constantly.
April 06: major bleed resulting in 2 embolizations
Aug 06: another major bleed resulting in 3 embolizations
July 07: (just a couple of weeks ago) another major bleed resulting in 2 embolizations

We asked his CF dr at our last visit what was the maximum # of embolizations he had ever seen/heard of before they simply couldn't stop the bleeding & the person died, and the doctor said 27 separate embolizations was the highest he had seen documented. Of course, we have personally known several Cfs who only had a couple of embolizations and still died because they simply couldn't stop the bleeding.

After numerous discussions with my husband we have been trying to determine the causes behind each of his big bleeds (of course, like many of you, he also has tons of streaking and small spots of blood in his regular sputum in all the months in between the big bleeds). We have come to a main conclusion: it is when he increases his interthoracic blood pressure that the bleeds occur. He was an avid weight lifter before all this happened and he has had to give it all up. He has tried even smmmmmmmmall amounts of weights just to try and keep his strength up and that was most likely what put us in the situation we had 2 weeks ago. Also, he has found a definite link (for him) between the more 'abrasive' treatments like HTS, inhaled Colistin, Pulmozyme and causing him to bleed.

The reason you are feeling the blood when you lay down is because it may have been leaking throughout the day(s) but when you are put in the supine position it starts to pool in certain parts of your lung (particularly on the right side). So, as you are doing those high intensity activities like weight lifting where your systolic blood pressure is raised so high, the arteries spring 'leaks' - your lung functions are awesomely high right now and you are probably at a point where you can prevent this from taking you down - but unfortunately it may mean sacrificing a piece of your life that you love - large weight lifting/working out. At least that is what we have found. Unfortunately, my husband's lung disease has progressed to where his PFTs are in the low 50s/low 40s, so he isn't really able to bounce back like he once could.

Our suggestions:
- get checked for any fungal infections (like Aspergillosus has been linked to increase bleeds)
- get checked for TB (just in case you have somehow contracted it - that would be a very easy test just to rule it out)
- hold off on your breathing treatments
- stop weight lifting; do cardio only (things that won't significantly raise your interthoracic pressure)
- if you stop bleeding over several weeks time, then slowly add one treatment back to see if those are irritating

Best of luck to all you guys -
Liz

Allisa35
08-13-2007, 05:20 AM
Sorry you're having such a hard time. I haven't had a chance to read all the replies so I may be repeating something here.

I feel VERY fortunate because I have never had hemoptysis. I have had the occassional streak of blood, but that's it. I have been on Pulmozyme for maybe 15 or so years. I have never encountered a problem with it. I also tried the hypertonic saline (only for about a week though) with no side effects. I have read comments from people on here though that say it made them bleed.

I have been taking L-lysine for years (to help fight off nasty cold sores). I saw a post some time ago from a lady that mentioned that she took lysine for hemoptysis. Maybe that is why I have never had a bleed. Or it could just be a coincidence. It might be something you want to check into.

Maybe you could try rotating your nebs to see if you can determine which one may be the problem. Maybe try Pulmozyme one night and try laying down afterwards to see if it causes a bleed, and so on.

Good luck to you!

Allisa35
08-13-2007, 05:20 AM
Sorry you're having such a hard time. I haven't had a chance to read all the replies so I may be repeating something here.

I feel VERY fortunate because I have never had hemoptysis. I have had the occassional streak of blood, but that's it. I have been on Pulmozyme for maybe 15 or so years. I have never encountered a problem with it. I also tried the hypertonic saline (only for about a week though) with no side effects. I have read comments from people on here though that say it made them bleed.

I have been taking L-lysine for years (to help fight off nasty cold sores). I saw a post some time ago from a lady that mentioned that she took lysine for hemoptysis. Maybe that is why I have never had a bleed. Or it could just be a coincidence. It might be something you want to check into.

Maybe you could try rotating your nebs to see if you can determine which one may be the problem. Maybe try Pulmozyme one night and try laying down afterwards to see if it causes a bleed, and so on.

Good luck to you!

Allisa35
08-13-2007, 05:20 AM
Sorry you're having such a hard time. I haven't had a chance to read all the replies so I may be repeating something here.

I feel VERY fortunate because I have never had hemoptysis. I have had the occassional streak of blood, but that's it. I have been on Pulmozyme for maybe 15 or so years. I have never encountered a problem with it. I also tried the hypertonic saline (only for about a week though) with no side effects. I have read comments from people on here though that say it made them bleed.

I have been taking L-lysine for years (to help fight off nasty cold sores). I saw a post some time ago from a lady that mentioned that she took lysine for hemoptysis. Maybe that is why I have never had a bleed. Or it could just be a coincidence. It might be something you want to check into.

Maybe you could try rotating your nebs to see if you can determine which one may be the problem. Maybe try Pulmozyme one night and try laying down afterwards to see if it causes a bleed, and so on.

Good luck to you!

Allisa35
08-13-2007, 05:20 AM
Sorry you're having such a hard time. I haven't had a chance to read all the replies so I may be repeating something here.

I feel VERY fortunate because I have never had hemoptysis. I have had the occassional streak of blood, but that's it. I have been on Pulmozyme for maybe 15 or so years. I have never encountered a problem with it. I also tried the hypertonic saline (only for about a week though) with no side effects. I have read comments from people on here though that say it made them bleed.

I have been taking L-lysine for years (to help fight off nasty cold sores). I saw a post some time ago from a lady that mentioned that she took lysine for hemoptysis. Maybe that is why I have never had a bleed. Or it could just be a coincidence. It might be something you want to check into.

Maybe you could try rotating your nebs to see if you can determine which one may be the problem. Maybe try Pulmozyme one night and try laying down afterwards to see if it causes a bleed, and so on.

Good luck to you!

Allisa35
08-13-2007, 05:20 AM
Sorry you're having such a hard time. I haven't had a chance to read all the replies so I may be repeating something here.

I feel VERY fortunate because I have never had hemoptysis. I have had the occassional streak of blood, but that's it. I have been on Pulmozyme for maybe 15 or so years. I have never encountered a problem with it. I also tried the hypertonic saline (only for about a week though) with no side effects. I have read comments from people on here though that say it made them bleed.

I have been taking L-lysine for years (to help fight off nasty cold sores). I saw a post some time ago from a lady that mentioned that she took lysine for hemoptysis. Maybe that is why I have never had a bleed. Or it could just be a coincidence. It might be something you want to check into.

Maybe you could try rotating your nebs to see if you can determine which one may be the problem. Maybe try Pulmozyme one night and try laying down afterwards to see if it causes a bleed, and so on.

Good luck to you!

Diane
08-13-2007, 01:50 PM
OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.

Diane
08-13-2007, 01:50 PM
OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.

Diane
08-13-2007, 01:50 PM
OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.

Diane
08-13-2007, 01:50 PM
OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.

Diane
08-13-2007, 01:50 PM
OK here goes, I am going to give good advice to those of you who are having recurring bleeds. I will first start with my hemoptysis story.
I coughed up blood for the first time when i was 21. Whats odd about that is, i had barely any lung involvment at that point yet, Barely ever coughed either. It scared me a bit, called the Dr. got some antibiotics and that was that.
I had the occasional bleed here and there for years and it never really riled me up too much because i thought " this is just part of cf'. Well 5 years ago, i had a bleed one day just like the others, and then the next day, and the next, and so on for a little over a week each one being a smidgen more than the last. One night while laying in bed i had a bleed and this one was larger, and i coughed it all out lay back down and went to sleep. Next night , i rolled over in bed and it started, but this time it wasnt stopping, I called 911 and they got me to the hospital but thankGod by then it had stopped. each time i leaned on my left side it started again. I was put on 3 iv antibiotics and things looked like they had calmed down, and one morning ( 2 days bleed free) in the hospital i leaned over on my left side in my bed and whammo....this one was bad, this one took a long time to stop and it was horrifying. I couldnt even catch my breath because the blood was coming so fast, I was sure i was going to drown right there in front of everyone. I could only muster 2 words out...."please God" and right after, it started to slow down. That day i had my first embolization. I have never lay flat to sleep since. In the past, laying flat was always a trigger and after that experience i just could not bring myself to lay flat anymore. I had another embolization about a month and a half later , and a third last Oct. The other two bleeds werent as big as the first. I never ever want to see another bleed that large again. While i was having the embolization the intervention radiologist said i had a big gaping hole in my blood vessel , took pictures and said he would include that in their medical journal.
Now for the advice part.... If you are having bleeding and it is recurring closer and closer and getting to be more volume each as time goes by....please get a cat scan with contrast. They will ( should) be able to see whats going on. It is usually a blood vessel that is dilated. The dilated ones get weak and break. Laying flat with a weak blood vessel can put too much pressure on it (with all the blood that will pool in the lungs) and it can break. This isnt medical fact .... it just makes logical sense.
Vitamin K is a given.... If you have hemoptysis problems, you need vit K.
L-Lysine is something else i have taken to help with hemoptysis and it has helped a bit. I still take it on a daily basis.
Some things to avoid if you have hemoptysis problems..... Large doses of Vit.E, fish oil, green tea, garlic,
anything that can thin the blood, you dont want to consume in large amounts. If this helps just one person avoid what i had to go thru ,i will be very happy.

jfarel
08-13-2007, 02:40 PM
Good advice Diane. I don't even think Doctors understand why some bleeds occur in CF'ers since it can happen in seemingly healthy individuals.

I've been blessed lately not to have had them. I believ ADEKS has really helped out.

jfarel
08-13-2007, 02:40 PM
Good advice Diane. I don't even think Doctors understand why some bleeds occur in CF'ers since it can happen in seemingly healthy individuals.

I've been blessed lately not to have had them. I believ ADEKS has really helped out.

jfarel
08-13-2007, 02:40 PM
Good advice Diane. I don't even think Doctors understand why some bleeds occur in CF'ers since it can happen in seemingly healthy individuals.

I've been blessed lately not to have had them. I believ ADEKS has really helped out.

jfarel
08-13-2007, 02:40 PM
Good advice Diane. I don't even think Doctors understand why some bleeds occur in CF'ers since it can happen in seemingly healthy individuals.

I've been blessed lately not to have had them. I believ ADEKS has really helped out.

jfarel
08-13-2007, 02:40 PM
Good advice Diane. I don't even think Doctors understand why some bleeds occur in CF'ers since it can happen in seemingly healthy individuals.

I've been blessed lately not to have had them. I believ ADEKS has really helped out.