Anyone been tested for Cystic Fibrosis since Bronchiectasis diagnosis?

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

Thanks 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.

I am a 64 year old female. I was hit with influenza A in February and RSV in April. In the midst of that, I had a chest CT showing mild bronchiectasis.

I saw a pulmonologist last week. He ordered a slew of labs to rule out various causes. I do have hypermobile Ehlers-Danlos which in and of itself can cause this.

Additionally I have a pathological CFTR mutation called the G542x variant discovered on genomic testing (1 copy) which was done 5 years ago. This makes me a CF carrier, at least.

Because I have some symptoms of pancreatic insufficiency and fatty acid synthesis dysregulation and bronchiectasis and also because it could be I have a lesser common mutation also that would give me a CF diagnosis, I undergo sweat chloride testing on June 22nd.

Also with just being a carrier, there is more and more literature that you can experience mild CF symptoms.

I am curious to see what all of this will show.

@jigglejaws94
I had genetic testing ordered by Mayo and have the CFTR gene. My sweat chloride was 68 & 67, above the threshold of 60 for CF, and was diagnosed with Cystic Fibrosis Related Disease. I am on Brinsupri for Bronchiectasis and Pulmozyme for the CF.

My situation is identical with elevated numbers on the sweat test run at NJH. I have some of the genetic markers but not all so I also have CFRD along with almost non existent IgM levels. I already receive IgG infusions because of CVID but no replacement for IgM is available. Two trials of Brinsupri were halted because of dramatic increases in blood pressure (180/118) so my mainstay of treatment is AerobiKa plus the vest along with Cresemba for Aspergillus. Yes, it is a hassle but my oxygen saturations stay above 95%- sometimes 98% and the ONLY real change is the vest!

I was tested for Cystic Fibrosis to see if I was a carrier, though there is none in my family. It was determined I was negative. My bronchiectasis was diagnosed as non cystic.Jeanne