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

Discussion
mamiebarker avatar

Anyone been tested for Cystic Fibrosis since Bronchiectasis diagnosis?

MAC & Bronchiectasis | Last Active: Jun 15 1:57pm | Replies (41)
Comment receiving replies
Profile picture for Pug, Volunteer Mentor @ckscoville

@irenea8 I was diagnosed with CF five years ago, after a positive sweat test and a DNA study by Johns Hopkins. I have also had countless blood tests and sputum samples for a variety of other issues (heart disease, anemia, periodic lung infections, etc.), but nobody has ever suggested that any findings from those were indicative of CF. I do have Bronchiectasis, so my sputum samples are probably no different than those of anyone with non-CF Bronchiectasis. Hope that helps.

Jump to this post

Replies to "@irenea8 I was diagnosed with CF five years ago, after a positive sweat test and a..."
sherrig | @sherrig | Jun 15 7:32am

@ckscoville Did the CF findings change your treatment?

I go to Hopkins and they recently did a Genetic Zoom blood test which resulted in showing I have one CFTR gene. Next is a research study taking some cells and testing them against some CF medications. Then that result is sent to my doctor who then decides if I need more Genetic Testing or something else. This is taking for ever to get done and the information I get is very limited from everyone at Hopkins or maybe I just don't understand how this works.

Would you mind sharing what your process was at Hopkins? I see Dr Belz.

VIEW AND REPLY