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Has anyone been tested for Cystic Fibrosis since Bronchiectasis diag?
Hello! I was diagnosed with Bronchiectasis in Feburary after being sick with pnuemonia since the beginning of September. After a plethera of lab tests, screenings, and dna testing my doctor is sending me to Nemours to rule out Cystic Fibrosis. I am 62 . Have any of you had this experience?
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OK, thanks for your reply. I'm going to ask my doctor if Class 5 mutations were tested for. I'm sorry for your diagnosis but hopefully it will give you some clarity and also give you eligibility for more targeted treatment. Best,
Mindy
Sue I did get to see a pulmonologist. He said my lung function tests were good. He didn't give me much information about my condition or how to manage it. He said I'd be more prone to Pneumonia and bronchitis and to make appointment if this occurs.
I've been reading posts on this site and I see a lot about cystic fibrosis. Is that related to cystic bronchiectasis?
Cystic fibrosis and cystic bronchiectasis are completely sepaeeate conditions.
With Cystic bronchiectasis, you need to be aware of any changes in your lung health - congestion, cough, mucus, fatigue, weight loss and and loss of appetite. These are indications of lung infection, which should be diagnosed with a sputum culture to determine which "bug" is invading your lungs.
Cystic fibrosis, on the other hand, is a genetic disorder which is typically diagnosed fairly early in life due to numerous lung infections and digestive issues.
So the caveat here is - if you have a respiratory illness see your pulmonologist ASAP.
How is your breathing and lung function now?
Sue
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2 ReactionsThanks so much for the information! My CT showed scarring in rt medial lobe and mucoid impaction.
I've had asthma since my teens so I have Albuterol that I use with exercise. I still have lingering cough. I have an appointment in two weeks so hopefully I can get more information. I really appreciate your information!
My test said Negative and No Clinically Significant Variants Detected. It also says this individual carries the 7T/7T benign poly T variants in the CFTR gene. No clue what that means.
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.