Adult CF Clinics

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anonymous

New member
Can any of you guys let me know what your clinics are like. Do you have a choice of doctors, physios etc? Is your clinic specifically for CF and can you be seen by a physio, gastro, dietician, ot, social worker if needed. Is physio as much a priority as at childrens hospital? Now at our adult clinic, I feel like we are just left pretty much to ourselves. Have our pft's done, chat with 1 of 2 Resp Physicians and sent on the way. Never see any of the above mentioned prof and feel like I get no real support. It's like your'e an adult now, get on with it and the only time you get to see anyone else is as an inpatient. The diabetic clinic is on a diff day in a diff area so that's another trip to the hosp. Pls fill me in on whether I am expecting too much and how it compares to other places. At the childrens hosp, ther was what was called a Team. Do other Adult centers have this?
Thanks in anticipation.
Jenni
 
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cfgirl38

New member
Hi Jenni. I'v never been to a child CF clinic as I was diagnost late . At 30 yrs old. I started going to the U of M Hosp. in Michigan when I was 33 and when I go I see a dietician, the social worker and my CF dr. Sometimes my CF dr's nurse shoots in for a minute. But their is someone on call for my questions at all times. They all gave my business cards with direct #'s and email addresses. So maybe ask about that as it is a bit faster to get answers or get something off your chest (so to speak) by writing an email. Hope this helps a bit as I know it is very frustrating before I started going to the CF clinic I didn't actually feel like I had a support system. Eva
 
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Joblazer86

New member
All CF centers run different but usually from my experience being to 4 so far you see a dietician,doctor, social worker and respiratory. Sometimes you have the nurse pop in and also some new docs, etc. that are in the learning process. your there guinea pig!!!!
 
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jenhum

New member
At my clinic (in NC), I just see the nurse who weighs, does blood pressure, and temp, then I go and do pft's, then I see my doctor and usually my doctors nurse. Once a year I am checked on by a social worker and dietician/nutritionist, unless I need to see them more frequently for some other reason. If I get sick and lose some lbs, the dietician/nutritionist comes in to make sure I get back on track. I do my own physical therapy, too, so no need to see a pt/ot. I feel very comfortable with my doctor, though, and wouldn't hesitate to ask her to call in any of those people if I felt I needed to see any of them. They are all there, they just don't all see me at every appointment.
 
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kybert

New member
my hospital is the same as yours jenni. we dont see the physio, dietician or anyone else. if we want to see someone we have to chase them up or wait for AGES so no one bothers. we also had a 'team' at the childrens hospital. there is only 1 designated cf doc in the adult hospital.
 
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anonymous

New member
At my adult clinic, they take our height and weight then you do your pft's. Then you wait in a room till the nurse comes in and askes you for your meds and stuff. There is only one main doc. for my clinic, but there are other docs that go in. One of the docs go in and you discuss things with them. If you have any problems and you would like to speak with the dietitian or what-not, they have them on call and they'll call one up for you. It's pretty organized and it's not that different from the Childrens Hospital (other than the Children's Hospital was much more modern)


Ashley 20w/cf
 
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anonymous

New member
Jim, I see Dr. Tammy Ojo-clark? She's fabulous. Very sincere and caring about anything that's going on with my CF. Who do you see? Eva
 
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