I am 81 years old, having been diagnosed at age 73. Obviously I have a very mild form of CF. I’ve been on Trikafta for nearly six years (hetero for F508 deletion). There may have been a very slight improvement in lung function when I started, but function was above average for my age already. What I did notice was daily swelling in my legs… Read more

So sorry for this repeat. Long story concluding with “…but I’m 81!”

Hi Pammy, Wow! There are two of us–at least. My sequencing was done by a lab that did molecular modeling (using two different models) to determine that the rare mutation is “disease-causing”, “probably damaging” and “deleterious”. I can send you that info so maybe you could present to your docs to support a diagnosis. (My sweat test was…

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I was diagnosed at age 73, heterozygous, with one F508 deletion, and one rare mutation predicted to be disease-causing. Obviously, my form of CF is not nearly as severe as that of many (I was born in 1944). Growing up in small-town and rural North Carolina I had “virus pneumonia” a number of times. On Boy Scout campouts, I’d always wake up…

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Growing up I kept having “viral pneumonia”. My dad didn’t think I should be having so many episodes and thus took me to an allergy clinic in Charlotte. I did have allergies and took shots from age 8 to 14. On Boy Scout campouts, I’d always wake up in the morning wheezing heavily. No fun! After my teenage years all obvious symptoms,…

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Kathy, I am so sorry to hear of your experience of deterioration of care at UNC. I have been treated there in Chapel Hill since December of 2017 (they diagnosed me). My most recent visit was December 26, 2023–the day after Christmas. I have to say that I have always been treated with the utmost care and respect. I leave feeling encouraged,…

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I had just the opposite problem when I started Trikafta–fairly severe and constant diarrhea. This seemed the more logical effect of Trikafta since chloride and hence water crosses cell membranes more easily (I presume INTO the gut). I finally controlled it with a combination of carboxymethyl cellulose (like Citrucel) and psyllium (like…

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Many thanks, Tim, for your quick response and helpful suggestion. I will add the probiotic and fiber supplement.

I am 77 years old, diagnosed with one f508 deletion plus a rare one in 2018. Been on Trikafta since January 2020. Have had severe diarrhea with lots of hydrogen sulfide (H2S) odor, plus lower leg swelling (exacerbated by having two knee replacements) every day since, unless (1) I eat copious amounts of homemade sauerkraut to get near-normal… Read more

I was diagnosed with CF at age 73 (I’m now just shy of 78). One copy of the F508 deletion; the other a rare mutation. I’ve had asthma/allergies and related problems along with infertility, but no other symptoms I remember. I started Trikafta in January 2020 and immediately began having horrible diarrhea and lower leg swelling. I had never… Read more