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    • #16170
      Bailey Vincent

      I’ve gone on a grand Complaining Tour this week on the forum for sure (“Be here all week!”), most of which has had to do with my rheumatic-style symptoms, and lazy attempts to connect the dots back to CF (or, in my case, atypical CF or CFTRD).

      I am not going to be able to see a Rheumatologist until March – which is a bummer, to say the least- so I’m left waiting as most of us are familiar with doing. I think: “Would something rheumatological help answer why I’ve had some many nerve and joint issues with my back this year? Or is it just CF bone stuff?”

      Or, as often feels the case with medicine, will I be left feeling sort of silly I wasted my time complaining and focus back on what we do know: CF.

      Have any of you ever been diagnosed with something “on top of your CF” (or CF+, if you will)?

      And, if so, who are your favorite doctors outside of your CF team? What about least favorite? (What doctor have you broken-up with the most over the years or had the hardest time finding and keeping?)

      I am finishing out the week with this in a fun way tomorrow (trust me)… But for now, I look forward to learning your replies! (And taking notes)

    • #16172
      Paul met Debbie

      Well, I think “CF” is not a condition but just a mechanism that is present in all cells of the body (the hampered chlorine/ion transport). It presents itself in myriad ways, some of which are conditions, although the popular attention is mostly focused on certain organs like lungs, intestines, liver etc. where fluid transport plays a more obvious role.

      But actually, the entire body is playing along this mechanism as well and depends more or less on ion-transport, which makes cf patients prone to a long list of conditions and diseases. Viewed in this light, there is not much room left for a “+-condition” I guess, it’s very hard to say with certainty that anything abnormal in the body of a cf patient is absolutely not cf-related. Even something as a simple appendicitis proved cf-related in my case, because the poor little organ was filled up with cf-muck and inflamed and burst mainly because of that. And other little unease’s are mostly related to side-effects of medication I take or took because of cf, so these are indirectly also cf stuff.

      Recently it becomes ever more clear that even cf carriers are more prone to all of these conditions than non-carriers, which stresses the far reaching importance of ion transport in the body.

      I talked about my doctors in a recent post – I try my best to entertain as few of them as possible. My GP would be my favorite non-cf specific doctor. I had some amazing GP’s in my life, these are the doctors with the most holistic view and best diagnostic skills I think, especially when they have a lot of experience.

    • #16178
      Tim Blowfield

      Paul, You are right – there is not much room for the “+’s” as CF affects every cell in the body. Yet they surely exist. But even if not caused by CF the Cf abnormality will affect the body’s response to both the disease and the treatment. Our experiences with Rhumatologists have been most disappointing, Missing such as ruptures Biceps Tendon and Rotator Cuff injuries to the shoulder, Diagnosing Polymyalgia Rhumatica when it was really Sjogren’s Syndrome (an autoimmune inflammatory syndrome which in CF is almost certainly a response to prolonged and chronic inflammation caused by CF).
      We have now reached the conclusion that any new symptoms are probably the result of CF.
      Unfortunately most Specialists in most fields have little understanding of CF and usually dismiss it as underlying the disease of their organ / system. They rarely see CF as affecting their treatment and as such often the treatment is poor even ineffectual. Many drugs that work in ‘normal’ persons do not work in CF’ers. Our experience with Heart Failure drugs are examples (ACE Inhibitors & Blockers, Calcium Channel Blockers etc all have had severe side effects and poor results). Some that usually lower blood pressure raised it and caused nasty headaches. It all seems to be that CF’ers electrolytes are abnormal, the result of that blocked Chloride Channel.

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