← Return to Anyone been tested for Cystic Fibrosis since Bronchiectasis diagnosis?

Discussion
Comment receiving replies
Profile picture for mtyler @mtyler

Yes I take an antibiotic when I have a flare up. Vertex , the pharmaceutical that produces Trikafta and my CF docs are seeing if they can appeal the denials. If I understand it correctly treatment for a CFTR related disorder differs from CF treatment which differs from bronchiectasis. But all three involve bronchiectasis. I may end up waiting a few years for more research into whether modulators such as trikafta are clinically trialed on my type of symptoms and my severely pathogenic p.phe508DEL variant and second variant since results say I'm for sure a carrier. I do not live in a state that has a good CF center or good pulmonologists.

Jump to this post


Replies to "Yes I take an antibiotic when I have a flare up. Vertex , the pharmaceutical that..."

@mtyler, my own diagnosis of CF followed years with bronchiectasis. When the treatments for bronchiectasis simply weren't sufficient, a Mayo Clinic pulmonologist had me tested (sweat test, filled by DNA testing) and I was then told I have CF. The main difference in treatment that the CF diagnosis made possible is Trikafta which has made a huge difference in my lungs and life. I am curious, where do you live, and have you found a good pulmonologist?