• Tim Blowfield replied to the topic Surgery and a small Trikafta update in the forum Adults​ ​With​ ​Cystic Fibrosis 4 months, 1 week ago

    Thanks for posting – wonderful news. As a CF community we need to document all these ‘improvements’ we experience with these new drugs. In this conversation not only has improved sinuses been documented but reduced inflammation. I do believe that many issues have gone under the radar. Reva has many issues that are not commonly reported including cardiomyopathy, hyperparathyroidism, hyperaldosteronism & Adrenal Failure, vasculitis and articular obstruction, Inflammation and Sjogren’s Syndrome, (and so her list goes on!). We are hoping to get her onto Trikafta to see what improves. Many of these under the radar problems may well show up where the lungs are improved by modern treatments including transplants. Though with transplants inflammation and Sjogren’s may well be controlled by anti-rejection drugs.
    And so we may well find out that CF is not just lungs and gut!

    • Like you said, “And so we may well find out that CF is not just lungs and gut!”… I really do wonder and feel the same. I would be so curious to see how your love, Reva, would respond to Trikafta if she had access to it. Is this in the works or still just hoping/waiting?

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