Adult Cystic Fibrosis (CF): Share your story & connect

Thank you so much for providing a forum to share and follow others that have been diagnosed with CF later in life. I am currently 71, diagnosed at the age of 59 via sweat test...after multiple pnuemania's, bronchiectasis diagnosis, sinus infections, etc. I worked until I was 65 - and found it a bit more difficult as I aged (particularly with travel for business trips). Last couple of years have been somewhat challenging - and would so appreciate to learn how others in similar situations are dealing with it. Many, many thanks!

@colleenyoung I had just turned 73 when I was diagnosed four and a half years ago. After numerous lung infections and bouts with pneumonia -- none of which had raised any red flags with my primary care doctor or the pulmonologist I had seen at the area hospital -- I got an appointment to see a pulmonologist at the Mayo Clinic in Jacksonville. He told me I had Bronchiectasis, and both he and an infectious disease specialist at Mayo began treatment. After a couple of years, however, the pulmonologist said that my disease simply wasn't behaving the way he expected, and he ordered testing for Cystic Fibrosis, even though that seemed unlikely. I had a sweat test which came back positive. Mayo then ordered a DNA test that was sent off to Johns Hopkins. Shortly after that, and a few days after my 73rd Birthday, I received a call from a CF nurse at Mayo telling me that I had CF!

I'm a 72 year old who was diagnosed after treatment for CLL (Obinutuzumab and Veneteclax) caused severe pulmonary issues. My Oncologist didn't think they were treatment related but finally had to stop treatment after 7 months of a 12 month course. I ended up at Mayo clinic in April of 2025 in a wheelchair and on supplemental oxygen. I have been extremely active my whole life and exercised daily until I couldn't. In four days Mayo was able to diagnose me with Bronchiectasis, CF related disease and severe immune deficiency. The pulmonary issues were brought on by my cancer treatment. I am now on AWC 2/day, Nasal Rinse with a steroid and antibiotic 2/day, Pulmozyme 1/day, Azithromycin 1/day and weekly Hizentra (immunoglobulin) infusions at home. Since Mayo (and NJH) I am back to exercising and hiking and getting back to enjoying life. Anxious to hear other stories.

@ckscoville, thank goodness for the persistence of the pulmonologist to check for CF even though that seemed unlikely. With a proper diagnosis, what treatments do you continue with today? Do you have a "routine"?

@colleenyoung I do have a daily routine of a 30-minute nebulizer treatment in the morning when I first get up (first with albuterol and then with 3% sodium chloride), and then the same treatment around 4:30PM every afternoon. I used to use a vibrating vest with every treatment, but I have a pacemaker, and the vest's vibrations made my pacemaker think I was running somewhere at full speed and was painfully hitting the maximum heart rate limit for the pacemaker! 🙂 So I gave up the vest, and my wife used a Theragun on my back periodically to break up stuff in my lungs. For the past couple of years, however, I haven't needed my wife to "beat up" on me! The Trikafta has really helped my lungs. Despite all the treatments, I have had a few lung infections over the years -- a few of which required hospitalization -- and have required various drugs (IV, etc.) to address the infections, directed by both my CF doctor at Mayo and an infectious disease doctor.