Best CF Clinics?

harvey

New member
I've heard that mortality rates vary from hospital to hospital for
CF patients and that this may be related to the
cleanliness/training/conscientious that varying hospitals have.
Sometimes it may be related to a particular cutting-edge
doctor.  Anyone care to list the top 10 CF hospitals?
 Top 5 in the West?<br>
<br>
Harvey
 

Nicole

New member
I don't know about an "official" list but I can tell you that we were extremely pleased with our sons care at Primary Children's in UT. We are also very happy with his care at Stanford in CA.
 

Scarlett81

New member
I guess it would be divided into to adult cf care and then pediatric care.

As a kid I was fortunate enough to grow up near Philly, Pa and my cf ped doc was Daniel Schidlow@St. Christopher's Hosp. He's an amazing ped cf doc. The rest of the staff is good too-though I haven't been there in 5 years so it could be different now. Schidlow has been voted by Forbes magazine-(I believe its Forbes, maybe Time mag)-several times as the number 1 respiratory ped doctor in the US.

As an adult, I married and moved to the New York area. Sow now I go to Dr. Walker @ St. Vincent's Hospital-(of 9/11 fame) I don't know about her, but the Respiratory PT team has a reputation as being one of the best in the US also. The head of the PT department there is the woman who basically invented the clapping airway clearance method many years ago. So I know from talking to people that they are definately in the top 5 at least in the US. They have a very agressive therepeutic approach to chest pt. Strict, but with amzing results. My doctor is an amazing doctor, and believe me I'm picky. Between stopping my pediatric doc when I got married and now, I went through 2 cf doctors. I won't name names, but holy crap....there are some bad ones. I can tell you with 100% positivity that if I had stayed with this one in particular, I'd probably be dead in a few years.
So, I'd have to rate my cf team at St. Vincent's #1. I've been around to alot of em. And they are amazing peeps!
To sum it up-in one year with them, I started at FEV1 of 48. And they helped me get to 75 and hold it.
 

Scarlett81

New member
I just realized I said amazing about 10 times in that post.

That-is amazing.

My god, I'm really over tired. You'll have to forgive me. I don't know what the h*ll is going on with me.

Have an amazing day!!!!
 
I

IG

Guest
As for the topic title...

Best CF Clinics... there are no official public lists or rankings for this. There was a forum thread earlier discussing this kind of thing but it's not a list per se. Here's an article that touches on CF clinic lists being kept private. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact">http://www.newyorker.com/fact/content/?041206fa_fact</a> and just to be contrary here's a rebuttal of that argument <a target=_blank class=ftalternatingbarlinklarge href="http://dimer.tamu.edu/simplog/archive.php?blogid=3&pid=839
">http://dimer.tamu.edu/simplog/....php?blogid=3&pid=839
</a>
As for the 'best' as far as I know you won't get mortality ratings for CF per hospital (unless you really dig) but you can find the best hospitals for Respiratory diseases. <a target=_blank class=ftalternatingbarlinklarge href="http://www.usnews.com/usnews/health/best-hospitals/rankings/specihqpulm.htm
">http://www.usnews.com/usnews/h...kings/specihqpulm.htm
</a>
As far as I know the University of Minnesota would be the 'best' figuratively for CF care. Dr. Warwick I believe practices (or at least heads it now if he doesn't practice) there (he's the one that developed the Vest, I think he had his hands in a few more things as well) I also believe the median age for survival at that clinic is 5 years beyond the average.
 

Haileysmommy

New member
I am glad to see National Jewish in Denver up there(#1 spot). That's where Hailey will go when she gets older. I know that Childrens Hosp in Denver ranks in the top 10 for CF clinics.
 

debs2girls

New member
My dd's clinic is probably not in the top 50 clinics, and if it is, I wonder how it made it. I am not too happy with this clinic or the one we came from.
 

ReneeP

New member
Just following up on Candice's comments about the Minnesota clinic. The director there now is Dr. Carlos Milla. Dr. Warwick is still there but doesn't "typically" see new patients. He still follows his older patients though. Dr Milla is wonderful as well. And the average life expectancy there is actually 47 (the national average is what, 35 or 37..I've lost track). But MN is at least 10 years above national average. However, keep in mind that MN in general is the healthiest state in the country so that plays a part. People are more health conscious there than many other areas.

Here is a link to the MN CF Center website:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.uofmchildrenshospital.org/Services/Services/c_195833.asp
">http://www.uofmchildrenshospit...Services/c_195833.asp
</a>
This is just a small summary of the clinic. There is another site that has much more detail but it seems to be down at the moment. I will try to get it a little later. (I'm not positive I have it written down right... but when I find it for sure, I'll post it).

It takes a special kind of person to live in Minnesota. It's not the most comfortable place to live and definately takes some getting used to (weather wise, of course..it's otherwise a wonderful place). I lasted for over 4 years and then moved, however, after a year away, I am seriously considering moving back.


One thing I would recommend if you were interested in MN as a place to go to clinic is to go to the CF Education Day they have each year. (it's in late Oct or early Nov...they haven't announced this years date yet). But you get so much info and it's a wonderful experience. Plus you get to meet Dr. Milla, Dr Warwick and all the other drs and staff.

Good luck in your search!
 

thefrogprincess

New member
Seattle Children's Hospital is amazing! The head of the CF department, Bonnie Ramsey (sp??) is nationally known for being on the forefront with new meds/treatments/research etc. The adult clinic at the University of Washington is also very good! I've been so happy with my care there. They are proactive in all aspects of my CF, not just lung issues. From what I understand Seattle and Stanford are the best on the west coast. I was diagnosed at Stanford.
 
R

RH3

Guest
We go to Arkansas Childrens Hospital,  in the last few years
they have grown a lot and they now have an adult clinic @ uams.. We
had the best pulmonary Dr. Robert Warren, he is seeing a limited
 # of patients now but they have lots of new Dr.s  and
they are all good. The Hospital is very committed to the improving
CF care. They have the best nurses and an awesome respiratory team.
They are always looking for ways to improve care.
 

Grendel

New member
I have been impressed with John Hopkin's Clinic and Northwestern's Clinic and University of New Mexico's Clinic.
 
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