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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.