Best CF Centers

C

crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

there is at least one center, maybe two, where life expectancy is over a decade higher than the US national average. this article is a great place to start and a must read for every CFer and caregiver of a CFer.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...6/041206fa_fact
</a>
that was a great article!! thanks for providing the link..too bad those places are soooo far away from me!

i went on a visit to the center mentioned, and you can read about my visit on my blog



<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a></end quote></div>
 
C

crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

there is at least one center, maybe two, where life expectancy is over a decade higher than the US national average. this article is a great place to start and a must read for every CFer and caregiver of a CFer.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...6/041206fa_fact
</a>
that was a great article!! thanks for providing the link..too bad those places are soooo far away from me!

i went on a visit to the center mentioned, and you can read about my visit on my blog



<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a></end quote></div>
 
C

crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

there is at least one center, maybe two, where life expectancy is over a decade higher than the US national average. this article is a great place to start and a must read for every CFer and caregiver of a CFer.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...6/041206fa_fact
</a>
that was a great article!! thanks for providing the link..too bad those places are soooo far away from me!

i went on a visit to the center mentioned, and you can read about my visit on my blog



<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a></end quote></div>
 
C

crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

there is at least one center, maybe two, where life expectancy is over a decade higher than the US national average. this article is a great place to start and a must read for every CFer and caregiver of a CFer.



<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
">http://www.newyorker.com/archi...6/041206fa_fact
</a>
that was a great article!! thanks for providing the link..too bad those places are soooo far away from me!

i went on a visit to the center mentioned, and you can read about my visit on my blog



<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a></end quote>
 
C

crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />there is at least one center, maybe two, where life expectancy is over a decade higher than the US national average. this article is a great place to start and a must read for every CFer and caregiver of a CFer.
<br />
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact
<br />">http://www.newyorker.com/archi...6/041206fa_fact
<br /></a>
<br /> that was a great article!! thanks for providing the link..too bad those places are soooo far away from me!
<br />
<br />i went on a visit to the center mentioned, and you can read about my visit on my blog
<br />
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a></end quote>
<br />
<br />
 
G

Gammaw

Super Moderator
This is an older thread, so I hope someone picks it up and helps me out! I want to talk about <strong>"the elephant in the room!"</strong> Identifying the Best CF Centers - better yet the best practices for CF Centers - seems to be one of the most important issues facing CFers. But I just don't see much on it. I went through the www.cff.org's patient registry data and was shocked to discover that some CF Centers report an average FEV1 of over 100%. Wow. That's a lot of people with different genotypes, different complications, bugs, meds, etc. Lung Function is still the best predictor of longevity, so I want to know how they manage this. Is the Patient Registry report the closest I can get? How do I know what practices exist at those Centers that distinguish their results from the rest? If there is no way to know, how do we go about figuring it out? I want the best for my CFer! I want to know what to do when things come up and problems exist. I want to know what works and what those Centers are doing. How do I figure that out? We believe in our CF Doc and our Center. They listen to us and work hard at it. This kind of information could only help them - and us.
 
G

Gammaw

Super Moderator
This is an older thread, so I hope someone picks it up and helps me out! I want to talk about <strong>"the elephant in the room!"</strong> Identifying the Best CF Centers - better yet the best practices for CF Centers - seems to be one of the most important issues facing CFers. But I just don't see much on it. I went through the www.cff.org's patient registry data and was shocked to discover that some CF Centers report an average FEV1 of over 100%. Wow. That's a lot of people with different genotypes, different complications, bugs, meds, etc. Lung Function is still the best predictor of longevity, so I want to know how they manage this. Is the Patient Registry report the closest I can get? How do I know what practices exist at those Centers that distinguish their results from the rest? If there is no way to know, how do we go about figuring it out? I want the best for my CFer! I want to know what to do when things come up and problems exist. I want to know what works and what those Centers are doing. How do I figure that out? We believe in our CF Doc and our Center. They listen to us and work hard at it. This kind of information could only help them - and us.
 
G

Gammaw

Super Moderator
This is an older thread, so I hope someone picks it up and helps me out! I want to talk about <strong>"the elephant in the room!"</strong> Identifying the Best CF Centers - better yet the best practices for CF Centers - seems to be one of the most important issues facing CFers. But I just don't see much on it. I went through the www.cff.org's patient registry data and was shocked to discover that some CF Centers report an average FEV1 of over 100%. Wow. That's a lot of people with different genotypes, different complications, bugs, meds, etc. Lung Function is still the best predictor of longevity, so I want to know how they manage this. Is the Patient Registry report the closest I can get? How do I know what practices exist at those Centers that distinguish their results from the rest? If there is no way to know, how do we go about figuring it out? I want the best for my CFer! I want to know what to do when things come up and problems exist. I want to know what works and what those Centers are doing. How do I figure that out? We believe in our CF Doc and our Center. They listen to us and work hard at it. This kind of information could only help them - and us.
 
B

briarrose

New member
I agree. I've been trying to do some research the last few days to figure this out after seeing lower numbers than I would like on CFF.orgs report on my clinic. I love my son's team, but I just feel that I am more aggressive than they are.

I want my son to have the best shot, and I want him to have the most aggressive treatment out there... I just can't figure out what that is or how to get it.
 
B

briarrose

New member
I agree. I've been trying to do some research the last few days to figure this out after seeing lower numbers than I would like on CFF.orgs report on my clinic. I love my son's team, but I just feel that I am more aggressive than they are.

I want my son to have the best shot, and I want him to have the most aggressive treatment out there... I just can't figure out what that is or how to get it.
 
B

briarrose

New member
I agree. I've been trying to do some research the last few days to figure this out after seeing lower numbers than I would like on CFF.orgs report on my clinic. I love my son's team, but I just feel that I am more aggressive than they are.
<br />
<br />I want my son to have the best shot, and I want him to have the most aggressive treatment out there... I just can't figure out what that is or how to get it.
 
R

Ratatosk

Administrator
Staff member
DS was diagnosed at a center in the City 250 miles away from home while recovering in the NICU from surgery to correct a bowel obstruction caused by meconium illeus. The doctors were very proactive, having us do CPT 4 times a day, prescribed nebulized bronchiodialators to open up the airways, vitamins... Baseline of NO cough...

So when we got home and attended the local CF clinic we found they were more reactive than proactive -- only do cpt if there are symptoms -- then stop once the symptoms go away. There were a lot of sickly looking kids in the clinic waiting room with productive coughs. A friend of mine who takes her child to the City as well, knows some teenagers from church who don't do the vest or cpt. So we quit going to our local CF clinic and go to the one in the City where we originally started.
 
R

Ratatosk

Administrator
Staff member
DS was diagnosed at a center in the City 250 miles away from home while recovering in the NICU from surgery to correct a bowel obstruction caused by meconium illeus. The doctors were very proactive, having us do CPT 4 times a day, prescribed nebulized bronchiodialators to open up the airways, vitamins... Baseline of NO cough...

So when we got home and attended the local CF clinic we found they were more reactive than proactive -- only do cpt if there are symptoms -- then stop once the symptoms go away. There were a lot of sickly looking kids in the clinic waiting room with productive coughs. A friend of mine who takes her child to the City as well, knows some teenagers from church who don't do the vest or cpt. So we quit going to our local CF clinic and go to the one in the City where we originally started.
 
R

Ratatosk

Administrator
Staff member
DS was diagnosed at a center in the City 250 miles away from home while recovering in the NICU from surgery to correct a bowel obstruction caused by meconium illeus. The doctors were very proactive, having us do CPT 4 times a day, prescribed nebulized bronchiodialators to open up the airways, vitamins... Baseline of NO cough...
<br />
<br />So when we got home and attended the local CF clinic we found they were more reactive than proactive -- only do cpt if there are symptoms -- then stop once the symptoms go away. There were a lot of sickly looking kids in the clinic waiting room with productive coughs. A friend of mine who takes her child to the City as well, knows some teenagers from church who don't do the vest or cpt. So we quit going to our local CF clinic and go to the one in the City where we originally started.
 
G

Gammaw

Super Moderator
Yes, I understand. It would be very disturbing to have such a difference in recommendations. And it's so difficult to know what is right. I would think there is a group that has generated a best practices protocol. But I just don't see anything or know where to go to find out! My 6 year old was also born with a meconium ileus. Once they dx CF, the recommendations for chest therapy were clearly for twice daily. We didn't have any conflict there, but it was done by hand perucssor (a wand). They said he wouldn't be old enough for the vest until he was 4. Then when we moved, the new center said no, he could use the vest and prescribed one. Lots of differences since then too. I'm not sure how to go about figuring out what methods work better than others under similar circumstances. It just seems like the best way to start would be to find out what centers with the best record do.
 
G

Gammaw

Super Moderator
Yes, I understand. It would be very disturbing to have such a difference in recommendations. And it's so difficult to know what is right. I would think there is a group that has generated a best practices protocol. But I just don't see anything or know where to go to find out! My 6 year old was also born with a meconium ileus. Once they dx CF, the recommendations for chest therapy were clearly for twice daily. We didn't have any conflict there, but it was done by hand perucssor (a wand). They said he wouldn't be old enough for the vest until he was 4. Then when we moved, the new center said no, he could use the vest and prescribed one. Lots of differences since then too. I'm not sure how to go about figuring out what methods work better than others under similar circumstances. It just seems like the best way to start would be to find out what centers with the best record do.
 
G

Gammaw

Super Moderator
Yes, I understand. It would be very disturbing to have such a difference in recommendations. And it's so difficult to know what is right. I would think there is a group that has generated a best practices protocol. But I just don't see anything or know where to go to find out! My 6 year old was also born with a meconium ileus. Once they dx CF, the recommendations for chest therapy were clearly for twice daily. We didn't have any conflict there, but it was done by hand perucssor (a wand). They said he wouldn't be old enough for the vest until he was 4. Then when we moved, the new center said no, he could use the vest and prescribed one. Lots of differences since then too. I'm not sure how to go about figuring out what methods work better than others under similar circumstances. It just seems like the best way to start would be to find out what centers with the best record do.
 
M

MargaritaChic

New member
<P>Our daughter goes to the University of Minnesota.  It is one of the clinics featured in the previously mentioned article.  Dr. Warren Warrick was a Pioneer in CF and invented the Vest.  He has now retired.  </P>
<P> </P>
<P>We love the staff.  The clinic has a Median Life Expectency that is 11 years higher than the National average.</P>
 
M

MargaritaChic

New member
<P>Our daughter goes to theUniversity of Minnesota. It is one of the clinics featured in the previously mentioned article. Dr. Warren Warrick was a Pioneer in CF and invented the Vest. He has now retired. </P>
<P></P>
<P>We love the staff. The clinic has a MedianLife Expectency that is 11 years higher than the National average.</P>
 
M

MargaritaChic

New member
<P><BR>Our daughter goes to theUniversity of Minnesota. It is one of the clinics featured in the previously mentioned article. Dr. Warren Warrick was a Pioneer in CF and invented the Vest. He has now retired. </P>
<P></P>
<P>We love the staff. The clinic has a MedianLife Expectency that is 11 years higher than the National average.</P>
 
You must log in or register to reply here.
Top