Urgent! Need to find better Adult CF Center

leothelioness31

New member
I'm new to this site. I'm having problems getting the care I need at my current adult CF Center. I'm looking for a new Adult Center in the south. Where do you go? What's your doctor like: does he/she listen to what you have to say? Do you see a CF doctor when you're in patient in the hospital? Do they carry all your medications when you're impatient? Do they have other doctors on the team besides the CF specialists? What's it like for you when you're inpatient? If there's anything else you can think to add please do so.
 

rubyroselee

New member
Hi,

I have had to switch CF centers in the past to get good care. I was extremely unhappy with one CF center I went to and had to do my research, talk to people, and find out a place that was a good fit for me. You have to be comfortable with your doctor and have a good relationship with them, and feel good about the facility you go to as well.
 

beleache

New member
Hey Leo, Welcome to CF.com :) I asked one of my southern Cysters about her center , here's the info ..
  • There are only 2 Cf centers in Alabama- the Adult CF clinic at UAB (University of Alabama at Birmingham- Kirkland Clinic building) and the children's clinic at Childrens Hospital (also in Birmingham). There may be a "satelite" office in Mobile, but as far as i know (based on the people I know), they still come to B'ham for admissions, etc. As far as I know, we have a pretty good clinic and a pretty good rep. We have a new director (as of a year ago), and while I 've only met her once, things seem to be going well and the other CFers I know here have been satisified with their care.


    also...
    We also get CFers from Mississippi frequently. Emory in Atlanta (about 2.5 hours from B'ham) also has a CF program, but I don't know anything about it. UAB is also a transplant center
  • Hope this was helpful ...

 

RachElizza

New member
I also live in Alabama and am having trouble getting the care I need from my current Adult CF clinic.

I have wondered if I can get the care I need at Vanderbilt in Nashville. Does anyone have feedback on their clinic?

Leo, have you had any success in finding a new clinic? I would live to know of any leads you have in getting better care here in Alabama.
 

leothelioness31

New member
My health care has gotten slightly better but there still are a lot of problems with the team that they're not willing on working on. Where in Alabama do you live?
 

rtorres25

Member
CF center in the south

Depending on what part of AL your are in, you might consider Tulane in New Orleans. I moved there last year after being seen in Mobile for a while. I'm very happy with it and had a recent hospital stay. I was happy with that, too. Good Luck.
 
F

fcalbano

Guest
I am 48 w cf. Part of being an adult is taking charge of your own health care as much as physically/humanly possible. I have often found it necessary to go outside the "cf" network to find the right med. care. I have always tried to keep a smaller rather than larger, cf clinic involved with my care. It is most important to maximize your resources. This can not be done relying on the cf clinic to take care of everything - they can't and won't. Currently, and for many years now, I have considered my endocrinologist my primary doctor. No one seems to like this, but he is great and this set-up is working. Clinics, doctors and all sorts of health care providers come and go but you don't. So find a clinic you are comfortable with, or as comfortable as you can be, practically, but reach out to find specialists who are the best in their respective fields. You need to be your own healthcare manager. Even though it is difficult, I carry all portable meds and an up-to-date list of all meds with me always and everywhere! I may be a guy with a bag, but it's no man purse. I carry a large leather knapsack that I, ever so casually, throw over one shoulder... I get more compliments on the damn bag then anything I've ever worn. My point is that you should include cf doctors always with your care but never limit yourself. The cf clinic should just be a part of your overall team. Keeping this approach helps you get the best care and continuous care regardless of the necessary switching of clinics or/ specialists.
 

kellyga

New member
I would check out Dr. Seth Walker and the Emory Adult CF Center in Atlanta. We go to the Emory pediatric program, but they have a relationship with the adult clinic. He has spoken at some of our events and seems great! Very personable, knowledgeable, and cares a lot for his patients. The nutritionist and main nurse are also great.
 

mkosborn

New member
I have been going to the adult Vanderbilt clinic for 5 years and I love the team. They have a nutritionist, social worker, pharmacist, respiratory therapist on the CF team that you are required to meet with. The head nurse is awesome and is completely on top of everything. She gets your prescriptions to the pharmacy immediately and if there is any problems with insurance they will do everything to get that medicine to you as quickly as possible. They actually listen to you and ask you what you think needs to be done. I like to choose what medicines that I go on. I live 3 hours away so when I feel sick I will just call them up and tell them which IVs i want to go and usually within 4 hours the IVs are at my house with a home health team. I have very little negative things to say about the clinic. They are very tough and expect you to be responsible and take care of yourself. They will give you hell if you don't. However, if you stay on the program then they are awesome to work with and they will work hard for you and try to make everything as easy as possible. Last visit I was in a rush and a nurse actually met me in a car in the hospital parking lot to do blood draws...so they do go the extra mile for you. I am also seeing the transplant team and it is easy to have the transplant team and your cf team all in the same building.
 

RachElizza

New member
My health care has gotten slightly better but there still are a lot of problems with the team that they're not willing on working on. Where in Alabama do you live?

Leo,

I just wanted you to know that I ended up moving my care to the Adult CF Clinic at Vanderbilt in Nashville, TN. It is a long drive, but well worth it. I have been very impressed with the medical professionals at Vanderbilt. The clinic has a completely different atmosphere compared to the previous clinic, in Alabama. If you are still discouraged by the care you are receiving I strongly encourage you to visit, or talk to other CF Clinics closest to you.

Hope you are getting the care you need!
 
Top