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Anyone else have Cystic Fibrosis?
Dr. Griffith from NJ called and confirmed that my genetic testing came back that I indeed have cystic fibrosis. I was holding out hope that the sweat test was wrong. He has referred me to the University of Iowa CF clinic since it is fairly close to where I live. Has anybody else tested positive and what are you doing?
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Yes, I was diagnosed with CF two years ago, and I'm being treated at Mayo Clinic in Jacksonville. It was a surprise to me, but it also explained a number of things, esp. my frequent lung infections!
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2 Reactions@tinasims - I was diagnosed in 2016 at age 65. I live in Phoenix, AZ so I'm seen locally at Phoenix Children's Hospital in their Adult CF clinic and I also go to National Jewish Health in Denver twice a year for consultation and treatment. @lindam272
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1 ReactionI am 61, I was just diagnosed with a severely pathogenic CFTR variant of CF and an abnormal lab on the P.PHE508DEL Allele 1. and have chronic bronchiectasis and MAC diagnosed since 2019. I am not sure which came first the Bronchiectasis or the MAC, pseudonomas, and Staph. I just know I ended up in the ER in 2019..
CF runs in my family .My old pulmonologist who diagnosed me with bronchietasis and MAC, (who knew CF runs in my family (my nieces' daughter) did not recommend I get tested for CF.
My new pulmonologist recommended I get tested. Now I am now being referred to a CF specialist clinic.
Am wondering what I can expect, what experiences does anyone have in knowing whether having a variant diagnosis of CF effects the type of treatment or outcomes ? I'm guessing I will have to wait and see, but any advice or thoughts?
I have also been referred to a CT clinic but it's but slow going. National Jewish said they would refer me but so far after 3 months they have not yet. My local pulmonologist is doing it now. I'm a little nervous but want to get on with this! I too have bronchiectasis and MAC and wondering how that is going to effect things.
Hello,
I have been on a long journey of trying to get some answers as to why I have chronic pancreatitis. While the treatment of Pancreatic Enzyme Replacement Therapy has helped me digest foods, I would like to understand the cause and also gain back some of the weight I’ve lost. My GI doc ordered some bloodwork to look for CFTR gene mutations and I definitely carry the mutated gene from one parent. Many people can be carriers without any symptoms and to my knowledge Atypical Cystic Fibrosis diagnosis is relatively new to the medical world. I did just have a sweat test which was in the normal range. My symptoms line up with CF effecting my pancreas, but I’m wondering if I’ll get a false negative through more testing as pulmonary symptoms are the norm for CF (which I don’t struggle with.)
Any experience you can share would be appreciated. I guess I don’t really care what label I’m given, but looking for treatment.
I’ve been turned down 2x by Mayo when I sent my own medical history in. Perhaps I’d have more success having my GI doc asking for me to be seen.