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Ratatosk
12-20-2006, 02:56 PM
Just noticed that care center info on each clinic is now available on the cff.org website. You do have to log on/register to access the info.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=5581&TYPE=1670
">http://www.cff.org/aboutCFFoun...cfm?ID=5581&TYPE=1670
</a>
L

Ratatosk
12-20-2006, 02:56 PM
Just noticed that care center info on each clinic is now available on the cff.org website. You do have to log on/register to access the info.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=5581&TYPE=1670
">http://www.cff.org/aboutCFFoun...cfm?ID=5581&TYPE=1670
</a>
L

Ratatosk
12-20-2006, 02:56 PM
Just noticed that care center info on each clinic is now available on the cff.org website. You do have to log on/register to access the info.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=5581&TYPE=1670
">http://www.cff.org/aboutCFFoun...cfm?ID=5581&TYPE=1670
</a>
L

Rokiss12
12-20-2006, 03:11 PM
ooo..haha wow that got me a lil flustered, thanks for posting b/c i've wondered about that for a while!

Rokiss12
12-20-2006, 03:11 PM
ooo..haha wow that got me a lil flustered, thanks for posting b/c i've wondered about that for a while!

Rokiss12
12-20-2006, 03:11 PM
ooo..haha wow that got me a lil flustered, thanks for posting b/c i've wondered about that for a while!

NoExcuses
12-20-2006, 03:24 PM
mean FEV1 for children ages 6 to 17 at the University of Minnesota - 97.9%.

Man if I had a kid in that age range I would do everything humanly possible to find out what in the world they're doing at that Center to keep those kids so healthy.

That's an incredible number

NoExcuses
12-20-2006, 03:24 PM
mean FEV1 for children ages 6 to 17 at the University of Minnesota - 97.9%.

Man if I had a kid in that age range I would do everything humanly possible to find out what in the world they're doing at that Center to keep those kids so healthy.

That's an incredible number

NoExcuses
12-20-2006, 03:24 PM
mean FEV1 for children ages 6 to 17 at the University of Minnesota - 97.9%.

Man if I had a kid in that age range I would do everything humanly possible to find out what in the world they're doing at that Center to keep those kids so healthy.

That's an incredible number

miesl
12-20-2006, 03:47 PM
The adult number isn't so bad either - considering as a TX center they get patient referrals from other clinics.

One thing that bothers me about the statistics is that I know Jeremy is screwing them up.

a) He's been healthy this year - he's only been to clinic three times. Reason one being that he was healthy, reason two being that we had a lot of stuff going on when he should have been to clinic #3 (wedding and all) - so we extended the amount of time between visits. Is it a failing of the clinic? No, it's a success! They have a patient who would have gone in extra if he needed to, but was well enough to enjoy LIFE instead!

b) He won't have a glucose tolerance test this calendar year. Last year's was 12/30, and our next clinic is in early March - when he'll have his fun fun fun GTT. Because our last annual study was so close to the end of the year (insurance switch, we wanted it under the old coverage)... it's just isn't going to happen in 2006.

miesl
12-20-2006, 03:47 PM
The adult number isn't so bad either - considering as a TX center they get patient referrals from other clinics.

One thing that bothers me about the statistics is that I know Jeremy is screwing them up.

a) He's been healthy this year - he's only been to clinic three times. Reason one being that he was healthy, reason two being that we had a lot of stuff going on when he should have been to clinic #3 (wedding and all) - so we extended the amount of time between visits. Is it a failing of the clinic? No, it's a success! They have a patient who would have gone in extra if he needed to, but was well enough to enjoy LIFE instead!

b) He won't have a glucose tolerance test this calendar year. Last year's was 12/30, and our next clinic is in early March - when he'll have his fun fun fun GTT. Because our last annual study was so close to the end of the year (insurance switch, we wanted it under the old coverage)... it's just isn't going to happen in 2006.

miesl
12-20-2006, 03:47 PM
The adult number isn't so bad either - considering as a TX center they get patient referrals from other clinics.

One thing that bothers me about the statistics is that I know Jeremy is screwing them up.

a) He's been healthy this year - he's only been to clinic three times. Reason one being that he was healthy, reason two being that we had a lot of stuff going on when he should have been to clinic #3 (wedding and all) - so we extended the amount of time between visits. Is it a failing of the clinic? No, it's a success! They have a patient who would have gone in extra if he needed to, but was well enough to enjoy LIFE instead!

b) He won't have a glucose tolerance test this calendar year. Last year's was 12/30, and our next clinic is in early March - when he'll have his fun fun fun GTT. Because our last annual study was so close to the end of the year (insurance switch, we wanted it under the old coverage)... it's just isn't going to happen in 2006.

dbtoo
12-20-2006, 03:58 PM
Clean air up there in Minnesota.

I agree with the fun with figures, too. I didn't go to the clinic for about 18 months. That's gonna bring down some numbers. You can artificially inflate them too, by not sending in some data, but they wouldn't do that, would they?

dbtoo
12-20-2006, 03:58 PM
Clean air up there in Minnesota.

I agree with the fun with figures, too. I didn't go to the clinic for about 18 months. That's gonna bring down some numbers. You can artificially inflate them too, by not sending in some data, but they wouldn't do that, would they?

dbtoo
12-20-2006, 03:58 PM
Clean air up there in Minnesota.

I agree with the fun with figures, too. I didn't go to the clinic for about 18 months. That's gonna bring down some numbers. You can artificially inflate them too, by not sending in some data, but they wouldn't do that, would they?

LouLou
12-20-2006, 05:50 PM
It was interesting to look at all the clinics I have ever attended. I found it most useful to click on the bottom of the page 'click here' and it reports the last 5 years data.
Also I found this astrick to be suspicous or maybe I just don't get it. Can someone explain? How would they adjust the numbers for these items? Doesn't that seem like it would take the credibility out of the numbers??

* Adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis

I understand that an inner city clinic's numbers aren't going to be as good as a world renown hospital in the county but how can they quantify what poverty (un educated parents) really do to lung function??? I sure hope they aren't only looking at people that compare apples to apples at each clinic. Seems sketchy.

LouLou
12-20-2006, 05:50 PM
It was interesting to look at all the clinics I have ever attended. I found it most useful to click on the bottom of the page 'click here' and it reports the last 5 years data.
Also I found this astrick to be suspicous or maybe I just don't get it. Can someone explain? How would they adjust the numbers for these items? Doesn't that seem like it would take the credibility out of the numbers??

* Adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis

I understand that an inner city clinic's numbers aren't going to be as good as a world renown hospital in the county but how can they quantify what poverty (un educated parents) really do to lung function??? I sure hope they aren't only looking at people that compare apples to apples at each clinic. Seems sketchy.

LouLou
12-20-2006, 05:50 PM
It was interesting to look at all the clinics I have ever attended. I found it most useful to click on the bottom of the page 'click here' and it reports the last 5 years data.
Also I found this astrick to be suspicous or maybe I just don't get it. Can someone explain? How would they adjust the numbers for these items? Doesn't that seem like it would take the credibility out of the numbers??

* Adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis

I understand that an inner city clinic's numbers aren't going to be as good as a world renown hospital in the county but how can they quantify what poverty (un educated parents) really do to lung function??? I sure hope they aren't only looking at people that compare apples to apples at each clinic. Seems sketchy.

princessjdc
12-20-2006, 06:03 PM
I was able to find my clinic, I didnt know that wichita kansas had one, so if I wanted I could transfer to over there, bc the radius is 100 on both ways. But I think Ill stay where Iam at, Tulsa is like my second home.

princessjdc
12-20-2006, 06:03 PM
I was able to find my clinic, I didnt know that wichita kansas had one, so if I wanted I could transfer to over there, bc the radius is 100 on both ways. But I think Ill stay where Iam at, Tulsa is like my second home.

princessjdc
12-20-2006, 06:03 PM
I was able to find my clinic, I didnt know that wichita kansas had one, so if I wanted I could transfer to over there, bc the radius is 100 on both ways. But I think Ill stay where Iam at, Tulsa is like my second home.

Ratatosk
12-20-2006, 06:59 PM
Noticed the local non-accreditted clinic we used to go to is now an "affiliate". Although there wasn't any data available regarding patients. Past appointments they kept stressing how they were going to be a satellite of one of the top clinics in the nation. I thought they were blowing smoke, but looks like they're making an effort.

Ratatosk
12-20-2006, 06:59 PM
Noticed the local non-accreditted clinic we used to go to is now an "affiliate". Although there wasn't any data available regarding patients. Past appointments they kept stressing how they were going to be a satellite of one of the top clinics in the nation. I thought they were blowing smoke, but looks like they're making an effort.

Ratatosk
12-20-2006, 06:59 PM
Noticed the local non-accreditted clinic we used to go to is now an "affiliate". Although there wasn't any data available regarding patients. Past appointments they kept stressing how they were going to be a satellite of one of the top clinics in the nation. I thought they were blowing smoke, but looks like they're making an effort.

jfarel
12-21-2006, 12:06 AM
Most of the clinics in my area VA, MD, DC look about the same. FEV1 for adults in Portsmouth VA is very high at over 70 percent. I wonder if they just have 1 patient. Also, there adult BMI is very high.

jfarel
12-21-2006, 12:06 AM
Most of the clinics in my area VA, MD, DC look about the same. FEV1 for adults in Portsmouth VA is very high at over 70 percent. I wonder if they just have 1 patient. Also, there adult BMI is very high.

jfarel
12-21-2006, 12:06 AM
Most of the clinics in my area VA, MD, DC look about the same. FEV1 for adults in Portsmouth VA is very high at over 70 percent. I wonder if they just have 1 patient. Also, there adult BMI is very high.

2perfectboys
12-21-2006, 01:42 AM
Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.

2perfectboys
12-21-2006, 01:42 AM
Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.

2perfectboys
12-21-2006, 01:42 AM
Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.

NoExcuses
12-21-2006, 02:12 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.</end quote></div>

I agree with the non-complaince.

I spoke to my doc yesterday about our Center's rate of non-compliance.

He has been "requiring" each of our 150 patients to come to the clinic quarterly for the past 2 years. And he explains why it's a good idea to each and every one of them.

But he admitted that he can't force patients to come in. He can't show up at their house and drag them by the earlobe to the clinic. It's ultimately up to the patient to show up to clinic.

He admits he is always trying to find ways to help patients understand why quarterly visits are so important and it pains him when patients don't comply. But ultimately he has little control over it.

NoExcuses
12-21-2006, 02:12 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.</end quote></div>

I agree with the non-complaince.

I spoke to my doc yesterday about our Center's rate of non-compliance.

He has been "requiring" each of our 150 patients to come to the clinic quarterly for the past 2 years. And he explains why it's a good idea to each and every one of them.

But he admitted that he can't force patients to come in. He can't show up at their house and drag them by the earlobe to the clinic. It's ultimately up to the patient to show up to clinic.

He admits he is always trying to find ways to help patients understand why quarterly visits are so important and it pains him when patients don't comply. But ultimately he has little control over it.

NoExcuses
12-21-2006, 02:12 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Louisville tops Minnesota!!! 98.1 mean for FEV1 for under 18. Minnesoata's guideline for care are actually sad. I can't believe that a clinic that is suppose to be so proactive is only reaching their required visits of peds and adults at 65% and 58%, sounds like a lot of non-compliance especially compared to Cinti clinic that had a peds rae of almost 75%. Too me, theses new #s are not really that useful and don't tell the whole story.</end quote></div>

I agree with the non-complaince.

I spoke to my doc yesterday about our Center's rate of non-compliance.

He has been "requiring" each of our 150 patients to come to the clinic quarterly for the past 2 years. And he explains why it's a good idea to each and every one of them.

But he admitted that he can't force patients to come in. He can't show up at their house and drag them by the earlobe to the clinic. It's ultimately up to the patient to show up to clinic.

He admits he is always trying to find ways to help patients understand why quarterly visits are so important and it pains him when patients don't comply. But ultimately he has little control over it.

2perfectboys
12-21-2006, 02:19 AM
Almost all of the Florida numbers are well below others, wonder why that is?

2perfectboys
12-21-2006, 02:19 AM
Almost all of the Florida numbers are well below others, wonder why that is?

2perfectboys
12-21-2006, 02:19 AM
Almost all of the Florida numbers are well below others, wonder why that is?

Rokiss12
12-21-2006, 12:19 PM
thing that bothered me was the diabetes testing MGH. its horrible, and when i was diagnosed, i'd never been tested before. it makes me think that maybe if i was at another hospital they would have caught it sooner? hmm...

Rokiss12
12-21-2006, 12:19 PM
thing that bothered me was the diabetes testing MGH. its horrible, and when i was diagnosed, i'd never been tested before. it makes me think that maybe if i was at another hospital they would have caught it sooner? hmm...

Rokiss12
12-21-2006, 12:19 PM
thing that bothered me was the diabetes testing MGH. its horrible, and when i was diagnosed, i'd never been tested before. it makes me think that maybe if i was at another hospital they would have caught it sooner? hmm...

Ratatosk
12-21-2006, 12:38 PM
I also wonder if U of MN's numbers regarding going to appointments quarterly goes down because of recent articles about quality of care and the number of patients from around the world going to the clinic to meet Dr. Warwick. Plus with travel times/costs, maybe some are only able to afford going once or twice a year, but still got to a clinic closer to home.

Found it interesting that the BMI was lower. L

Ratatosk
12-21-2006, 12:38 PM
I also wonder if U of MN's numbers regarding going to appointments quarterly goes down because of recent articles about quality of care and the number of patients from around the world going to the clinic to meet Dr. Warwick. Plus with travel times/costs, maybe some are only able to afford going once or twice a year, but still got to a clinic closer to home.

Found it interesting that the BMI was lower. L

Ratatosk
12-21-2006, 12:38 PM
I also wonder if U of MN's numbers regarding going to appointments quarterly goes down because of recent articles about quality of care and the number of patients from around the world going to the clinic to meet Dr. Warwick. Plus with travel times/costs, maybe some are only able to afford going once or twice a year, but still got to a clinic closer to home.

Found it interesting that the BMI was lower. L

ladybug
12-22-2006, 06:59 PM
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!

ladybug
12-22-2006, 06:59 PM
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!

ladybug
12-22-2006, 06:59 PM
Interesting stuff.... did anyone else notice the clinic in Washington D.C. is the ONLY clinic with aduts reaching the highest average FEV1?!? I was a bit surprised by that since you don't hear much about them. And, their other stuff looked better than most too. Anyone know anything about this clinic? I was surprised. I guess I expected Minneapolis to lead the charts on all factors. I thought it was ranked #1, however, perhaps they're just ranking based on children's FEV1 and not other criteria?


Anyway, I found this to be interesting stuff, yet a bit confusing to read. I wish there was a way to see all the clinics (or at least a cross section of them) side by side to make comparisons easier. There are several throughout the country I have been to, and to be honest, its daunting trying to go back and forth between them to see how they compare. Either way though, I'm VERY glad they did this. It is a step in the right direction, and my hope is it motivates clinics to step up to the plate if they don't do as well. I also agree however that these numbers can be largely due to other factors besides a clinic's particular view... poverty, air quality, access to exercise, access to high calorie food, etc. can all play a huge role. So, if you look at a particular place and wonder why BMI is low or high or whatever, it could be someone's access to high calorie foods where they live. I know in Texas, there was a fast food joint on every corner! lol.... Yet, in my hometown in ND, it was a COLD drive to get that malt from the local fast food place. I didn't go out nearly as often when a craving struck as I do here in Vegas. I don't know. Just some things to ponder.

Good stuff though... kudos to CFF!

Jem
12-23-2006, 07:14 PM
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.

Jem
12-23-2006, 07:14 PM
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.

Jem
12-23-2006, 07:14 PM
It is nice for all of us to now have at least some type of standardized statistics on the cf clinic's we go to. But I am wondering how many of us started going to our present clinic with an FEV 1 number lower than the national average?

Here is my example: I have been going to my present clinic for 5 years now and when I began there my FEV 1 was 48. You have to take into account that I only have one lung and was 43 years old at the time, so 48 was good under those circumstances. Now, 5 years later my FEV 1 is 47, which is not much of a change. I am very happy with being stable as is my doctor. However, I am sure my statistics are bringing down my clinic's FEV 1 average which would not represent the clinic fairly because they have done a wonderful job in keeping my FEV 1 stable.

I also go 4-6 times a year for checkups. I have a lung function test and sputum culture done at every visit and have been tested for diabetes at least 3 times in the 5 years I have been going there. All this is because I am compliant with their requests. So I would assume they would offer these same services to all patients but according to my clinic's numbers the statistics do not reflect that and it seem that patients are not receiving optimum treatment.

Having the information of national averages and setting national goals is vital but doctors can only do so much. We as the patients must be compliant and aggressive with being informed, taking our medications, doing treatments, exercise, etc...

There is that saying, "You can lead a horse to water but you can't make him drink." For a little balance and to get an even clearer picture I would love to see a statistic of how many of the patients at the clinics are compliant (day in and day out) with following protocol given to us by our doctors.

Those were just a few of my thoughts. All in all at least now having some sort of reporting of statistics is a huge leap forward for accountability and setting goals is always a good thing, for the clinics and for the patients.

SEANP
12-26-2006, 03:30 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.

SEANP
12-26-2006, 03:30 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.

SEANP
12-26-2006, 03:30 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>2perfectboys</b></i>

Almost all of the Florida numbers are well below others, wonder why that is?</end quote></div>

My son goes to the Orlando Nemours and I was not happy with their numbers either. I plan on talking to them to find out what we need to do to be more like MN's numbers.

Emily65Roses
12-27-2006, 05:01 PM
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.

Emily65Roses
12-27-2006, 05:01 PM
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.

Emily65Roses
12-27-2006, 05:01 PM
I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.

Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.

While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.

My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.

I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.

Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.

Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.

And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.

JazzysMom
12-27-2006, 05:19 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!

JazzysMom
12-27-2006, 05:19 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!

JazzysMom
12-27-2006, 05:19 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I may be the weird one, but I'm not going to be all up in arms about numbers. I don't personally give half a d*mn about the best clinic or Warwick or whoever or any of that garbage.



Again, I may be weird, but I'm more concerned with PERSONAL CARE. If you're at a clinic with good numbers *and* you can get good personal care, then good for you. What I talk about here is more concerning clinics with good numbers and less-than-wonderful care.



While I understand people are going to be drawn to the best numbers, please do not forget about personal care. For yourself, for your children, for your spouse, whatever the case may be.



My clinic's numbers aren't the best, but they're not dead low, either. They're *just* above the national averages. And that is perfectly fine by me. Not only because the numbers are at least average, but also because I'd follow my current doc to just about any clinic.



I don't know, I know I'm one of a <u>VERY</u> few, but it just bugs me out that people get SOOOOOOO effing wrapped up in the numbers. Yes, you want good numbers. But guess the hell what, guys? CF is <b>progressive</b>. No matter where you go or how good your clinic is or whatever else, your numbers *ARE* going to go down at some point.



Quite frankly, as long as you're satisfied with your care... who gives a d*mn what the numbers are? I know a lot of you do. Just consider not putting so much of your opinions of various places on the numbers. I get a PFT and a sputum culture every time I go. I get blood work once a year, and a chest X ray once a year. Yale may not be the cleanest d*mn clinic, but like I said, I'd follow John just about anywhere.



Pay attention to your DOC as well as your clinic. Pay attention to PERSONAL CARE as well as the stupid numbers.



And do me a favor, no one jump up my @ss about this (I know, I'm asking a lot). I <i>know</i> why the numbers are important, I know all the crap involved. You don't need to tell me. I just don't see why people sacrifice personal care for numbers. That's all I'm trying to say here.</end quote></div>


For the first time I TOTALLY agree with you. I wouldnt up & leave my clinic because they arent at the top. The connection I have with every person involved in my care is soooooo important to me. I have known most/many of them for 30 years. All of them from the office staff to housekeeping/food service on the hospital floor have seen me be an annoying teenager, graduate high school, get married (twice) and have a baby. The thought of having to start the relationship connection again makes me sick to my stomach & that is assuming I would be fortunate enough to have the same type of connection with as many if any others.

I am confident in my doctor. I am happy with my doctor & she knows my stubborness & when to call my bluff. All that is just as important IMHO as the numbers........

BTW You are the weird one Em, but I still agree with you LMAO!