CF Centers/Clinics

[OperaMama]

see if this link works for the article



http://www.ahip.org/Links/Paperless/2005/BuildingBridges/materials3/Gawande_a.pdf



I read it when it came out, a whole year before our son's diagnosis... Still had it in a pile in the guest room!

 

[TwistedTanya]

Well, I'll tell you my experiences with the CF clinics I have had in the past since I have been to 4 different ones.

Pediatric and Adult
- Atlanta, Ga - went there around 1989-1997 and they had a fantastic clinic and great doctors (Dr. Caplan and Dr. Weatherly)! They actually had their own building and parking just for CF patients! One floor was for clinic and one floor was for patients who had to be hospitalized.

ADULT CF CLINICS

- West Palm Beach, FL at St. Mary's Hospital - Wonderful doctors (Dr. Goldfinger and Dr. Cruz), good hospital care but not the most up to date clinic.

- Central Florida Pulmonary in Orlando, FL - Nice up to date clinic but the care and the doctor (X) I had there were horrible! Even the hospital my CF doctor sent me to was awful and they didn't even have all the meds there that I take at home. My CF doctor only came by to see me once out of the 2 weeks I was there. Even in clinic he always seemd to busy to listen to me or care. I would actually have to ask for PFT tests most of the time and then he would look back to see when I had my last one and realized I was due for one! That was just rediculous!! He actually sent me home once with an 02 saturation of 84 and I'm normally around 94! Of course I ended up calling the ambulance to pick me up 2 days later b/c I couldn't breathe. I could list tons of other bad things that happened under his care. For the sake of every Adult CF patient out there, I will admit that I have heard from 2 other of his patients that they like him but I wonder if they have ever seen another CF doctor and don't realize how much better it could be. I also have heard of a patient who moved and started seeing him and when he sent them to the hospital and they got there, they were so horrified by the hospital that they walked out and went to see their old doctor and go to that hospital. They were closer to Orlando but still not too far to go back to their last doctor. I never went to the Pediatric CF clinic so I don't know how it is but I know that my old doctor from Atlanta, Dr. Weatherly, is there now and he was a great doctor back when I had him.

- Tampa General Hospital, FL - By far the best hospital, the best care, and the best doctor I have ever had! All hail DR. MARK ROLFE!!!! This guy works 7 days a week and when I was in the hospital for 2 weeks, he came by to see me every day!! He is very informative and lets me know what's going on. He made sure I got the best care in the hospital and they had every med that I take at home including the ADEK vitamins. He even had me doing pulmonary rehad every day which helped a lot! He is very down to earth and seems to really truely care about his patients. He can be quite funny at times too. To top it off, he is also the lung transplant director for the hospital so he really knows a lot! They have only been doing lung transplants there for about 5 years so normally I wouldn't consider going to a place that hasn't had more experience but I most likely will have it done there b/c I know that I will be in great care! I have to say that the hospital is gorgeous too! Not the most important thing but it does help out mentally. I had a room on the 9th floor that overlooked downtown Tampa and a waterway that comes from the ocean. I actually saw a huge school of Jack fish, 2 stingrays, and a dolphin while I was there. It just made the stay a little bit easier. The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!

 

[TwistedTanya]

Well, I'll tell you my experiences with the CF clinics I have had in the past since I have been to 4 different ones.

Pediatric and Adult
- Atlanta, Ga - went there around 1989-1997 and they had a fantastic clinic and great doctors (Dr. Caplan and Dr. Weatherly)! They actually had their own building and parking just for CF patients! One floor was for clinic and one floor was for patients who had to be hospitalized.

ADULT CF CLINICS

- West Palm Beach, FL at St. Mary's Hospital - Wonderful doctors (Dr. Goldfinger and Dr. Cruz), good hospital care but not the most up to date clinic.

- Central Florida Pulmonary in Orlando, FL - Nice up to date clinic but the care and the doctor (X) I had there were horrible! Even the hospital my CF doctor sent me to was awful and they didn't even have all the meds there that I take at home. My CF doctor only came by to see me once out of the 2 weeks I was there. Even in clinic he always seemd to busy to listen to me or care. I would actually have to ask for PFT tests most of the time and then he would look back to see when I had my last one and realized I was due for one! That was just rediculous!! He actually sent me home once with an 02 saturation of 84 and I'm normally around 94! Of course I ended up calling the ambulance to pick me up 2 days later b/c I couldn't breathe. I could list tons of other bad things that happened under his care. For the sake of every Adult CF patient out there, I will admit that I have heard from 2 other of his patients that they like him but I wonder if they have ever seen another CF doctor and don't realize how much better it could be. I also have heard of a patient who moved and started seeing him and when he sent them to the hospital and they got there, they were so horrified by the hospital that they walked out and went to see their old doctor and go to that hospital. They were closer to Orlando but still not too far to go back to their last doctor. I never went to the Pediatric CF clinic so I don't know how it is but I know that my old doctor from Atlanta, Dr. Weatherly, is there now and he was a great doctor back when I had him.

- Tampa General Hospital, FL - By far the best hospital, the best care, and the best doctor I have ever had! All hail DR. MARK ROLFE!!!! This guy works 7 days a week and when I was in the hospital for 2 weeks, he came by to see me every day!! He is very informative and lets me know what's going on. He made sure I got the best care in the hospital and they had every med that I take at home including the ADEK vitamins. He even had me doing pulmonary rehad every day which helped a lot! He is very down to earth and seems to really truely care about his patients. He can be quite funny at times too. To top it off, he is also the lung transplant director for the hospital so he really knows a lot! They have only been doing lung transplants there for about 5 years so normally I wouldn't consider going to a place that hasn't had more experience but I most likely will have it done there b/c I know that I will be in great care! I have to say that the hospital is gorgeous too! Not the most important thing but it does help out mentally. I had a room on the 9th floor that overlooked downtown Tampa and a waterway that comes from the ocean. I actually saw a huge school of Jack fish, 2 stingrays, and a dolphin while I was there. It just made the stay a little bit easier. The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!

 

[TwistedTanya]

Well, I'll tell you my experiences with the CF clinics I have had in the past since I have been to 4 different ones.

Pediatric and Adult
- Atlanta, Ga - went there around 1989-1997 and they had a fantastic clinic and great doctors (Dr. Caplan and Dr. Weatherly)! They actually had their own building and parking just for CF patients! One floor was for clinic and one floor was for patients who had to be hospitalized.

ADULT CF CLINICS

- West Palm Beach, FL at St. Mary's Hospital - Wonderful doctors (Dr. Goldfinger and Dr. Cruz), good hospital care but not the most up to date clinic.

- Central Florida Pulmonary in Orlando, FL - Nice up to date clinic but the care and the doctor (X) I had there were horrible! Even the hospital my CF doctor sent me to was awful and they didn't even have all the meds there that I take at home. My CF doctor only came by to see me once out of the 2 weeks I was there. Even in clinic he always seemd to busy to listen to me or care. I would actually have to ask for PFT tests most of the time and then he would look back to see when I had my last one and realized I was due for one! That was just rediculous!! He actually sent me home once with an 02 saturation of 84 and I'm normally around 94! Of course I ended up calling the ambulance to pick me up 2 days later b/c I couldn't breathe. I could list tons of other bad things that happened under his care. For the sake of every Adult CF patient out there, I will admit that I have heard from 2 other of his patients that they like him but I wonder if they have ever seen another CF doctor and don't realize how much better it could be. I also have heard of a patient who moved and started seeing him and when he sent them to the hospital and they got there, they were so horrified by the hospital that they walked out and went to see their old doctor and go to that hospital. They were closer to Orlando but still not too far to go back to their last doctor. I never went to the Pediatric CF clinic so I don't know how it is but I know that my old doctor from Atlanta, Dr. Weatherly, is there now and he was a great doctor back when I had him.

- Tampa General Hospital, FL - By far the best hospital, the best care, and the best doctor I have ever had! All hail DR. MARK ROLFE!!!! This guy works 7 days a week and when I was in the hospital for 2 weeks, he came by to see me every day!! He is very informative and lets me know what's going on. He made sure I got the best care in the hospital and they had every med that I take at home including the ADEK vitamins. He even had me doing pulmonary rehad every day which helped a lot! He is very down to earth and seems to really truely care about his patients. He can be quite funny at times too. To top it off, he is also the lung transplant director for the hospital so he really knows a lot! They have only been doing lung transplants there for about 5 years so normally I wouldn't consider going to a place that hasn't had more experience but I most likely will have it done there b/c I know that I will be in great care! I have to say that the hospital is gorgeous too! Not the most important thing but it does help out mentally. I had a room on the 9th floor that overlooked downtown Tampa and a waterway that comes from the ocean. I actually saw a huge school of Jack fish, 2 stingrays, and a dolphin while I was there. It just made the stay a little bit easier. The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!

 

[Jem]

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

The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!</end quote></div>


This is really good to read because my this is my brother's doctor for the last 8 yrs!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for sharing!

 

[Jem]

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

The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!</end quote></div>


This is really good to read because my this is my brother's doctor for the last 8 yrs!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for sharing!

 

[Jem]

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

The hospital is actually on a big island, how cool is that! I promise that anyone who goes to the Adult CF clinic in Orlando, the hour and half drive to see Dr. Rolfe and if needed, a stay at the hospital, will be totally worth it! You will thank me! I know I am sooo thankful to have such a great doctor and great care and I feel like I have a new hope with my health!</end quote></div>


This is really good to read because my this is my brother's doctor for the last 8 yrs!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks for sharing!

 

[NoExcuses]

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

Where can I find the New Yorker article?</end quote></div>

at the bottom of my signature <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[NoExcuses]

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

Where can I find the New Yorker article?</end quote></div>

at the bottom of my signature <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[NoExcuses]

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

Where can I find the New Yorker article?</end quote></div>

at the bottom of my signature <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[NoExcuses]

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.



The numbers are interesting though.</end quote></div>


But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.

 

[NoExcuses]

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.



The numbers are interesting though.</end quote></div>


But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.

 

[NoExcuses]

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.



The numbers are interesting though.</end quote></div>


But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.

 

[ladybug]

One also should take into account the different things surrounding the "best" and "worst" clinics... For example, socio-economic issues, access to care, air quality and pollution, rural vs. city, climate (cold, hot, humid, dry), etc. These numbers are in fact a good place to start, but when I read this initially, I instantly was surprised at how some of the clinics in places that are more polluted have far worse numbers than other places. Also, some of the more humid, gulf-weather climates had some low numbers. As far as patient compliance, it shoud also be considered (as noted above) access to care. I drive 6 hours EACH way for a good CF clinic, but many are not as lucky and "settle" for a clinic nearby, not enjoy that clinic or believe in it and then not show up for appointments, etc... It can all be a vicious cycle and one never knows exactly WHY a clinic's numbers, avergaes, patient compliance is the way it is. Doctors work wonders, but they (and patients) can only go so far... Environment and socio-economic issues, as well as support systems, etc. play a BIG role in how we do with our CF as well as our overall life quality. JMO though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

One also should take into account the different things surrounding the "best" and "worst" clinics... For example, socio-economic issues, access to care, air quality and pollution, rural vs. city, climate (cold, hot, humid, dry), etc. These numbers are in fact a good place to start, but when I read this initially, I instantly was surprised at how some of the clinics in places that are more polluted have far worse numbers than other places. Also, some of the more humid, gulf-weather climates had some low numbers. As far as patient compliance, it shoud also be considered (as noted above) access to care. I drive 6 hours EACH way for a good CF clinic, but many are not as lucky and "settle" for a clinic nearby, not enjoy that clinic or believe in it and then not show up for appointments, etc... It can all be a vicious cycle and one never knows exactly WHY a clinic's numbers, avergaes, patient compliance is the way it is. Doctors work wonders, but they (and patients) can only go so far... Environment and socio-economic issues, as well as support systems, etc. play a BIG role in how we do with our CF as well as our overall life quality. JMO though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

One also should take into account the different things surrounding the "best" and "worst" clinics... For example, socio-economic issues, access to care, air quality and pollution, rural vs. city, climate (cold, hot, humid, dry), etc. These numbers are in fact a good place to start, but when I read this initially, I instantly was surprised at how some of the clinics in places that are more polluted have far worse numbers than other places. Also, some of the more humid, gulf-weather climates had some low numbers. As far as patient compliance, it shoud also be considered (as noted above) access to care. I drive 6 hours EACH way for a good CF clinic, but many are not as lucky and "settle" for a clinic nearby, not enjoy that clinic or believe in it and then not show up for appointments, etc... It can all be a vicious cycle and one never knows exactly WHY a clinic's numbers, avergaes, patient compliance is the way it is. Doctors work wonders, but they (and patients) can only go so far... Environment and socio-economic issues, as well as support systems, etc. play a BIG role in how we do with our CF as well as our overall life quality. JMO though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

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

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.


The numbers are interesting though.</end quote></div>

But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>


I am curious what will happen with Minnesota after Dr. Warwich passes. Even with all his training of others, if the others dont have the same passion as he does I wonder if this positive trend will carry on. As to not putting all the stock in the #'s......I still believe this. Minnesota seems to have a great clinic, but if people dont have a choice of going there then they must work with the #'s at the closer clinics to them. Using them as a tool as I said and not as the sole deciding factor.

 

[JazzysMom]

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

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.


The numbers are interesting though.</end quote></div>

But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>


I am curious what will happen with Minnesota after Dr. Warwich passes. Even with all his training of others, if the others dont have the same passion as he does I wonder if this positive trend will carry on. As to not putting all the stock in the #'s......I still believe this. Minnesota seems to have a great clinic, but if people dont have a choice of going there then they must work with the #'s at the closer clinics to them. Using them as a tool as I said and not as the sole deciding factor.

 

[JazzysMom]

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

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

Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.


The numbers are interesting though.</end quote></div>

But don't forget.... centers like Minnesota have an average FEV1 of 98% for their pediatric patients. And their patients live the longest out of any other center in the US.

Give it a few years.... Minnesota is going to continue to produce these kids with CF who have normal lung functions and pretty soon their life expectancy is going to be decades ahead of any other center. People will look back and wonder what in the world happened? How did they get so far ahead....

There is a bell curve in care. And all of us want to be apart of a clinic that's on the forefront.....

So you can always put different explanations to #s.... but average age of death and FEV1, it's hard to debate that.</end quote></div>


I am curious what will happen with Minnesota after Dr. Warwich passes. Even with all his training of others, if the others dont have the same passion as he does I wonder if this positive trend will carry on. As to not putting all the stock in the #'s......I still believe this. Minnesota seems to have a great clinic, but if people dont have a choice of going there then they must work with the #'s at the closer clinics to them. Using them as a tool as I said and not as the sole deciding factor.

 

[Jenica]

I understand that whether a center is a transplant center or not, patient compliance, etc. can affect the adult numbers, but what about the numbers for pediatrics? I'm not sure that compliance or transplants come into play there at all. The center we visit for my daughter is ranked lower than the two other Boston accredited centers in every category, which is obviously worrisome. We've been very happy with the care our daughter has received, but when I see that the FEV1 at our center is 82.3 for pediatrics compared to 92.4 and 84.6 at the other two clinics, I can't help but wonder if we should stay put or jump ship to a clinic with significantly higher numbers.