I was diagnosed by a pulminologist that was not at a clinic and was not a CF specialist. He even told me as much but I kept seeing him since he diagnosed me. After a year of gettting worse I found out about the Oklahoma City CF clinic. I liked them much better (especially Debbie Berry, the RN) but after a couple of years I moved to Springfield, Missouri.
There is not a CF clinic here in Springfield, but there is a group that comes down once a month from the clinic in Columbia. I went to them a couple of times, but didn't like them, so I started going to Dr. Carey in Tulsa, OK (2.5 hours away). He's my favorite by far. He's really agressive and has me feeling better than I've felt since before I was diagnosed.
So bottom line, I think it has way more to do with the individual doctor than whether or not they are an official CF clinic. The 3 clinics I've dealt with are completely different, and it took me a while to settle on one I'm happy with. If the doctor you're considering seeing understands how CF needs to be treated, then go for it. Believe me, you won't mind the extra commute if you are happier witht the care you are recieving.
A tip: If you don't already have satellite radio, get it. It makes the drive fly by!
There is not a CF clinic here in Springfield, but there is a group that comes down once a month from the clinic in Columbia. I went to them a couple of times, but didn't like them, so I started going to Dr. Carey in Tulsa, OK (2.5 hours away). He's my favorite by far. He's really agressive and has me feeling better than I've felt since before I was diagnosed.
So bottom line, I think it has way more to do with the individual doctor than whether or not they are an official CF clinic. The 3 clinics I've dealt with are completely different, and it took me a while to settle on one I'm happy with. If the doctor you're considering seeing understands how CF needs to be treated, then go for it. Believe me, you won't mind the extra commute if you are happier witht the care you are recieving.
A tip: If you don't already have satellite radio, get it. It makes the drive fly by!