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A comment on The Cystic Fibrosis Breakthrough That Changed Everything. Parent comment

Re:The Cystic Fibrosis Breakthrough That Changed Everything by joney_baloney on Sunday March 10, 2024 @12:22AM (#39656914)
My younger brother has CF and takes Trikafta and it's absolutely made all the difference in the world, it's wonderful to see. Watching all the years of research and CFF funding finally pay off is really something.

My personal situation is probably pretty unique, in that I have CF as well, but had a double lung tx many years ago. A couple years ago my transplant team (actually it may have been the CF people.. fuzzy memory) asked me if I was interested in getting on Trikafta and after thinking it over for about 30 seconds I told them I'd probably pass. It seemed like it wouldn't have any beneficial effect on my lungs, as they no longer "have CF", and that I assumed it would just make extra weight for my decently healthy but still under par lungs to have to drag around. They didn't disagree.

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Re:The Cystic Fibrosis Breakthrough That Changed Everything by Sammi on Sunday March 10, 2024 @10:51AM (#39659603)
Yes but CF affects all liquids in your whole body. You can get diffuse long term damage anywhere and everywhere in your body. Having to eat calorie amounts like someone without CF sounds like a good tradeoff in order to not risk this damage.
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Re:The Cystic Fibrosis Breakthrough That Changed Everything by joney_baloney on Sunday March 10, 2024 @11:50AM (#39660100)
Yeah and it'd help my sinuses too but at my age I'm used to taking the enzymes when I eat and they work well enough. Long term damage is basically my personality at this point, lol.
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Re:The Cystic Fibrosis Breakthrough That Changed Everything by abdulhaq on Sunday March 10, 2024 @12:45PM (#39660542)
I'm in a similar situation so it's funny to see someone else here with the same. I had my transplant in 1988. There's also Steve Rasmussen (you can google him) who AFAIK also does not take Trikafta.
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