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New Cystic Fibrosis (CF) Diagnosis
Haven't posted here in a while. My bronchiectasis was not improving, despite my twice-daily breathing treatments (7% saline) and SmartVest. My pulmonologist at Mayo was curious about a cystic fibrosis variant, so he ordered a sweat test. To my surprise, that came back positive. So Mayo then ordered a DNA analysis from Johns Hopkins. After a number of weeks, that came back showing a variant of cystic fibrosis. Because of my clinical presentation, etc., Mayo Clinic has now diagnosed me as having cystic fibrosis! I've got to set some kind of record to be diagnosed with CF at the age of 73! In any event, I'm about to start Trikafta and would appreciate any advice if anyone else happens to be in my situation....
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Yes, it can be. Specific enzymes are absent in some variations of CF, and must be supplied to support digestion of food and absorption of nutrients. You can read about it here: https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/symptoms-causes/syc-20353700
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1 ReactionHey CKS… you are not alone.I have bronchiectasis and MAC I also have the CF gene.t had the CF diagnostic Test done and a sweat test twice.It seems to be inconclusive.My sweat test was 2.9.They are saying I have non active CF. How did they determine this at Mayo Jacksonville.?I am about to go to the adult CF center at Columbia Presbyterian Hospital in Manhattan.I have studied Trikafta,it is the miracle drug for CF but don’t know if it will help Bronchiectasis and MAC.Good luck on the treatment.
At some point, I would like to see a forum on Mayo Clinic Connect for cystic fibrosis. There is a lot of room for discussion, especially since the pharmaceutical treatments for it are different (e.g., Trikafta) than for bronchiectasis alone.
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2 ReactionsWow this is also so interesting !
Hi. I was diagnosed the same. They keep pushing trikafta. I woukd like to know how you made out.
K
My experience with Trikafta has been very positive. Before it, I would routinely have to go through 30 (sometimes 45) minutes of coughing, etc., once I lay down to go to sleep. And that was just one effect. Overall, it has made the ordeal of getting junk out of my lungs much, much easier. When I started it, I went through a few days of "purging" when I was bringing up all kinds of junk from my lungs, but things settled down after the purge.
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1 ReactionWhat is the CF diagnostic test and sweat test? I had the genetic test done which came back negative. But had not heard about the other tests. Thanks
Good morning Irene - Here is a description of the diagnostic process for CF from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/diagnosis-treatment/drc-20353706
Sue
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1 ReactionI was diagnosed with CF after seeing my bronchiectasis get worse and taking a sweat test after all other options had been exhausted as to why. I was 65 at the time in 2015. I have a rare mutation and am not on any modulators. I have had MAC (2016 which led me to this group) which is currently stable and after being in the hospital with exacerbations 4 times in 2021, I have been stable through 2022 and currently. Such a relief! There are many support groups and resources for CF patients and you may be surprised at how many people are late diagnosis these days. @lindam272
Glad to hear you have been stable in 2022. Hope it continues. What regimen do you follow to keep your lungs clean? I was surprised to hear that CF can be a late diagnosis. Thanks for the info!