GodLovesMe
New member
Hi, I have a 6 month old that was diagnosed. We are looking for Dr.'s in NY. Please recommend a doctor and also let me know why you like them... TIA
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Dr. Needed for newly diagnosed patient.
- Thread starter GodLovesMe
- Start date
There are about 200 CF centers in the country. Patients followed in the top 10 centers live about 7 years longer than those followed in the rest. To find out which center is the best in your area go to www.cff.org then treatment then care center network then review care center data. Find the center in your area with the best FEV1 ( lung function) for children. Make sure it is a center that follows a decent number of patients (100 at least)
Pick a doctor at this center. Keep in mind that the friendliest doctor is not necessarily the best doctor. Go to the best center in your area even if you have to drive.
Pick a doctor at this center. Keep in mind that the friendliest doctor is not necessarily the best doctor. Go to the best center in your area even if you have to drive.
GodLovesMe
New member
I found a center near me. How do I review care center data? Also how do I know if a center has good FEV1?
Go to www.cff.org then click on the bar at the top that says "treatments" Under that bar go to "care center network" At the bottom go to "review care center data". You will find the FEV1 for that center compared to the national average and the national goal. Go to the center that has an FEV1 higher than the national average and closest to the national goal. If you have to drive further then do so. It will be worth it
cheerfulpuppies
Member
What part of New York do you live in? What county? I live in ny too
S
stranger
Guest
I am wondering if some of the potentially transforming CFTR treatments should re-arrange how we rate centers; it would appear to me that the methodology provided by the cff.org and expertly documented here does not give weight to how progressive one CF Center is v. another. The impact/benefit of a bucket of this data could mean that perhaps the FEV1 numbers could look neutral or unattractive, but centers who embrace this approach and fight for patients will leap-frog, data-wise, Treatment Centers who still believe the world is flat with regards to treating CF and are not open to disruptive change - the disrupters will be able to provide improved FEV1 numbers faster and by the time you go back to check a year later, the disruptors will be towards the top of the list. I personally lived through this hell with a center whose numbers looked avg / good according to cff.org but whose approach was a kin to burning witches in the 14th century.
Should ppl w CF care about the approach of the CF Centers and if they do, how could/would this get measured?
Should ppl w CF care about the approach of the CF Centers and if they do, how could/would this get measured?
JustaCFmom
New member
It is worth going further for top care
Personally, I like convenience; but I met a mom who just transferred to my clinic and the difference it has made for her baby has been dramatic. He was constantly sick with continual hospitalizations. Now, at my clinic, he is a healthy, thriving toddler. The doctors and dietitian are tops and it shows.
Good luck in your search!
Personally, I like convenience; but I met a mom who just transferred to my clinic and the difference it has made for her baby has been dramatic. He was constantly sick with continual hospitalizations. Now, at my clinic, he is a healthy, thriving toddler. The doctors and dietitian are tops and it shows.
Good luck in your search!
S
stephen
Guest
G-dLovesMe;
I was extremely happy with the Adult CF Center at Columbia University Medical Center in Manhattan NY (Dr. Emily DiMango). They also have a Pediatric CF Center which I would suspect is just as good. If the Columbia University CF center at NewYork-Presbyterian Hospital is convenient, I would surly give them a try. Wherever you do chose, it does not have to be permanent. Also, you can always go someplace for another opinion.
A good CF Center should be pro-active in participating in studies, and in obtaining new drugs and treatments that may be appropriate for their patients. DiMango got me on Cayston several years before it got FDA approval.
As JustaCFmom pointed out, convince can be important. The traffic getting from my home to the CF Center at Columbia University was often horrendous. Since I was fortunate to have choices, I did end up switching to a CF center on Long Island. I’m very pleased with them too!
In a sense, my CF doctor is almost like my primary care physician. I don’t have another pulmonologist. With my current CF center I can always see a doctor within a day or two. Since it takes less than 30 minutes to get to there, many times I am able to get an appointment the same day I call.
It goes without saying that if I thought I would be better off, I would return to my previous center. I have gone back occasionally to get a second opinion, only to find out that my present course of treatment was the same as they would be recommending.
For me, the data comparing CF Centers lacks some very important parameters. Not included is:
Again, remember that wherever you chose, it does not have to be permanent. Also, you can always go someplace for another opinion. I found it was good to have a relationship with more than one center.
Good Luck!
I was extremely happy with the Adult CF Center at Columbia University Medical Center in Manhattan NY (Dr. Emily DiMango). They also have a Pediatric CF Center which I would suspect is just as good. If the Columbia University CF center at NewYork-Presbyterian Hospital is convenient, I would surly give them a try. Wherever you do chose, it does not have to be permanent. Also, you can always go someplace for another opinion.
A good CF Center should be pro-active in participating in studies, and in obtaining new drugs and treatments that may be appropriate for their patients. DiMango got me on Cayston several years before it got FDA approval.
As JustaCFmom pointed out, convince can be important. The traffic getting from my home to the CF Center at Columbia University was often horrendous. Since I was fortunate to have choices, I did end up switching to a CF center on Long Island. I’m very pleased with them too!
In a sense, my CF doctor is almost like my primary care physician. I don’t have another pulmonologist. With my current CF center I can always see a doctor within a day or two. Since it takes less than 30 minutes to get to there, many times I am able to get an appointment the same day I call.
It goes without saying that if I thought I would be better off, I would return to my previous center. I have gone back occasionally to get a second opinion, only to find out that my present course of treatment was the same as they would be recommending.
For me, the data comparing CF Centers lacks some very important parameters. Not included is:
- The center’s participation in studies of new drugs and treatments.
- Their participation in programs that can obtain new drugs before they get FDA approval.
- Their pro-active policy of prescribing, and getting, “off label” drugs for patients that may benefit from them - like Kalydeco.
Again, remember that wherever you chose, it does not have to be permanent. Also, you can always go someplace for another opinion. I found it was good to have a relationship with more than one center.
Good Luck!