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    • #15443
      Bailey Vincent
      Keymaster

      Yesterday I posted about which organ is impacted most by your disease process, but today I wanted to ask something that I’ve seen discussed a lot on the forums lately…

      Should CF clinics include ALL specialists?

      For myself personally, I have to attend my GI and colo-rectal doctors frequently, as well as my liver guy, my gastric pacemaker person, my bone specialist, and onward… ALL outside of my clinic visits. Although my sinus surgeon works closely with clinic, he too is a completely different visit.

      I’ve been wondering for awhile: Why don’t CF clinics have their own specialists in these specific departments, since CF is so much more than just lungs and bugs?

      What is your opinion: Would you prefer this or do you think it should be adapted some other way?

    • #15445
      Jenny Livingston
      Keymaster

      Oh, man, wouldn’t this be the dream? Like you, my ENT works closely with my CF team, but seeing him also requires an entirely different appointment. My clinic is 2.5 hours from home and I’m not always able to schedule on the same day. This means that, more than once, I’ve had to schedule those appointments on different days within the same week or month… which is a LOT of driving!

      However, I understand that the logistics might not be very easy to work out. I imagine that getting funding/accreditation to include those other disciplines as core members of a CF team might be very tricky. But a girl can always dream, right?

    • #15452
      Tim Blowfield
      Participant

      How great that would be! Maybe then we would get Specialists having some idea of CF. Since diagnosis in 2009 my wife has had a continuing battle between her CF Dr and Cardiologist about the pulmonary issues she has. Recently there has been some agreement once it is recognised that her Cardiomyopathy was indeed the result of her faulty electrolyte levels caused by her faulty CFTR. As I have posted elsewhere we need (without diminishing the effect CF has on the lungs) gain a far greater understanding of the effect of CF on all cells in the body, effects which result from the fact that if Chloride is not pumped out of the cells it will be high within the cells causing cations (mainly Potassium and Calcium) to also be high. Such high levels may be expected to affect the Adrenal Glands and the function of Cardiac and other muscles, Parathyroid Glands and calcium metabolism. It will explain why CF’ers react in strange ways to a range of drugs, Ca Channel Blockers, ACE inhibitors and why serum Potassium is often low (Hypokalaemia).
      We still need our CF treatments to concentrate on improving lung and bowel function but we need also to look more broadly at the issues in other cells.
      A CF cure will need not just to correct the mucous in the lungs but also correct the balance of electrolytes within the cells. I would be interested to know if Trikafta reduces the incidence of hypokalaemia in CF’ers.

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