Adult CF clinic Doctors

[anonymous]

I live in Phoenix, AZ and used to visit Dr. Gong (Phoenix Childrens Hospital "Adult" CF clinic), but found the appts. to be long, time consuming and overall felt that I was treated more like a kid than an adult. I just didn't feel like they understood what a working adult goes through. I don't have two hours for an appt. ie. I just wanted to see the doctor, find out what my test results were and take the necessary antibiotics to treat the infection.

Anyway, perhaps I live in a different world and should enjoy a two hour appt. and the long exposure to other CF patients.

So my question is, what do other adults think about their Adult CF clinic?

 

[anonymous]

Hi,
I was treated at a children's cf clinic in a children's hospital until 2 1/2 years ago. When I was 37 I decided to switch hospitals to see what it would be like to be treated in an adult clinic, mainly out of curiosity but also some dissatisfaction with the care. Unfortunately, at the time there was no transition program in place, so I had to pretty much take care of it on my own. But I am very glad I did. I'm lucky that I live near a city with several cf centers. I love my adult CF doc, I feel like I get so much more from the appointment, they are much better able to understand what I am going through in terms of job/family and other adult issues. I feel like my opinion is much more valued and instead of just coming in and talking TO me my doctor actually spends the time and talks WITH me. I am actually learning new things about cf and the medical reasons for why things are the way the are. I don't feel like I got that at the children's center. Another up side is the lack of clowns- I always felt a bit silly being in a children's hospital! I'm very happy I made the switch, I never knew what I was missing until I tried it!

Kim
39 w/cf

 

[anonymous]

Hi,
Sorry, don't know if it was clear from my reply that I switched hospitals and am now treated in an adult cf clinic in an adult hospital.

Kim
39 w/cf

 

[anonymous]

I currently live in Illinois and we are going to be moving to AZ in 5 or less years and upon some of my prelim research I found that Phoenix was the only center in AZ that had a adult clinic. So, why if you live in Phoenix are you going to a childrens doctor??

 

[anonymous]

To the first poster, I can totally relate. I never get away from the CF Clinic in under an hour and a half! It's nice that all of the resources are available there, but like you said, when you have a job, etc, it's hard to take a whole morning/afternoon off for a Dr's appt.<img src="i/expressions/clock.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Dr. Gong is an adult CF doctor who runs the adult clinic at the Phoenix Childrens Hospital ( he also see's children)

 

[Beowulf]

I've been to the adult clinics at University of California at San Francisco Hospital, John's Hopkins Hospital, University of New Mexico Hospital, USC Hospital, and the UCSD Hospital, (I travel a lot.), and I found that each clinic does something a little different than the next, though they all take anywhere from 2-4 hours to see you, depending on if you have to get tests performed or not. One thing that was kind of nice among the Clinics is that the UCSD Clinic was in the evening so if you are a working CFer you don't have to take the day off to meet with the doctors. I haven't been to them in a while, so I don't know if they still do that. Unfortunately, the UCSD one was the most disorganized. John Hopkins was the most impressive. Right now I am seen at USC and they do a very good job. I too may move to Phoenix this or next year. It would be interesting to see how AZ runs their Clinic.

M/33

 

[anonymous]

I go to USC Adult CF Clinic (Los Angeles) and my CF Team is unreal. Two great pulmonologists, an AMAZING nurse, excellent social worker, etc.

Anyone who is in reach of LA should go here.

I was at Children's in LA until I was 18. The transition was easy and painless.

Love them!


-Amy 23yrs

 

[mare]

I have had this issue for years. I am now 50. I have yet to find a CF Adult clinic in CT that I like and this is with the times. Last time I tried one they were still using outdated treatment methods. They wanted to put me on prophylactic antibiotics, which I do not handle well.
It may be sick and they insisted that it meant I needed more! Went back to my adult pulmonologist and he was amazed that the Clinic was still in the "dark Ages". My best luck has been with my regular guy,

 

[Emily65Roses]

Mare, you're in CT? Do you go to Yale? Or where?