Finding A Physican



  • Definition of “CF Clinic”?
  • Who Treats CF?
  • On Seeing a Variety of Specialists
  • But Who Do I Call for the Sniffles?
  • Definition of “CF Clinic”?


    Who Treats CF?

    Pediatrics is a specialty. Pediatric pulmonology is a subspecialty. CF is an “area of interest” and I doubt you’ll ever see people with residencies and boards specifically in that–its too “narrow” an area. The CF experts are usually specialists in something related (like Pediatric Pulmonology) who developed an interest or, in an academic setting do research, in CF. These docs doing research in CF at major teaching hospitals (hospitals with medical schools affiliated) are probably the most expert “experts” you’ll find. Fortunately, most major teaching hospitals affiliate with every HMO they can (or the state) because they are very expensive to run and chronically run a deficit. Also (thank heaven) most of them take Medicaid, especially the ones affiliated with a state university medical school.


    On Seeing a Variety of Specialists

    “I believe one of the major reasons I have survived so long, is because my doctors treated the symptoms! My G.I. specialist treats the G.I. problems, my allergist treats my allergic reactions (shots included autogenous vaccines), the pulmonary specialists treated my pulmonary difficulties (and still works with my CF doctors). No CF doctor can possibly have the expertise to treat all the problems that accompany the disease. I believe that is expecting too much. I am fortunate that my various doctors do not fight for turf…if one or another did, I’d fire them”


    But Who Do I Call for the Sniffles?

    A Mom says: “The key, for us, is that a child doesn’t necessarily know what “feels” right and what doesn’t — especially when very young. If a child has experienced that feeling all their life, then there is nothing to signal something “wrong”. There is no way of knowing the feeling isn’t “normal”. Adults know what’s different (wrong) with themselves and when/whether to self-treat, seek an internist, or ask for a specialist. The dilemma with pediatrics is that children don’t necessarily have this capacity — especially at the age of 8 or under — they might be gaining on it but still don’t necessarily know. That was one of the interesting perceptions”

    An adult CFer says: “I recall early on after my diagnosis, calling my then-CF doc and complaining of a cold. He sat me down and told me that I would still have a number of regular (i.e., read normal) experiences and would have to learn the subtle tones of my body. Getting to know me!

    I do have a general internist who is perfectly capable of handling routine health concerns such as colds, etc. In fact, I think it is very important that people with CF have regular internists and have regular check-ups. I know people with CF who have not visited general internists and have delayed diagnosis for other ailments such as cancer and heart disease. Having CF does not preclude you from having other ailments and just needing to have your overall health care assessed from time to time apart from CF.

    For simple colds, I try over-the-counter remedies. If the cold persists, I will telephone my internist. Sometimes he will prescribe something (usually not antibiotics since these are ineffective against viruses). If the cold lingers a bit longer then I call my CF doctor. If I happen to develop a cold close to the time when I may be due for a “tune-up”, then I will just go-ahead with the tune-up a bit early.

    However, I can’t help but urge people with CF to have a general internist as well as a CF doc…after all we’re human”