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

To get the conversation started in this new discussion dedicated to adult-onset cystic fibrosis I am inviting @ckscoville @lindam272 @tinaesims @gails53 @mtyler @lenorj @jnmy @pb12nyc @robot @gails53 @ritapearl @kattyk @303wendy @belizeanmarky @lindagmilne123 to join in.

Some of you are well into your journey managing CF, while others may still be asking questions and not have a confirmed diagnosis. Let's connect and learn. What's your CF story?

@colleenyoung I am so grateful for a place for those of us with Cystic Fibrosis. Thank you! I want to encourage others to join in the conversation. As someone who was diagnosed with CF late in life, I am regularly shocking people -- even medical professionals -- when they hear I have CF, because in the past the disease often prevented anyone from reaching my age. [Of course, when I wss young, even after I was hospitalized with a lung infection, I don't think many babies and children were tested for CF.]

I hope others will share your story, concerns, ideas, and questions here. Looking forward to getting to know fellow patients!

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, may I ask how old you were when you were diagnosed? How was your CF discovered?

@colleenyoung - Thanks for including me in this conversation. I was diagnosed at 65 after my bronchiectasis (diagnosed the year before) continued to get worse. I asked the dr to run tests to find out why and the last test they ran was a sweat test for CF which came back positive. It's been 9 years now. Initially, it wasn't too bad, but lately I'm finding myself hospitalized at least twice a year. I've been on and off supplemental oxygen but typically don't need it regularly right now. There are late diagnosis groups that are very supportive and I've found helpful in understanding our differences and similarities from those diagnosed as babies and young children. One is with the Cystic Fibrosis Research Institute (CFRI) and the other through Halite Solutions Group, Kristina Robinson. I hope others join in. This forum is invaluable. I don't know what I would have done without the MAC group @lindam272

@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 currently 68 and was diagnosed at National Jewish about 4 years ago. I went there to find some answers and I sure did! I've only been hospitalized once since then and that was because I caught a bug and ended up coughing so hard that I broke a blood vessel! My how I got diagnosed is similar to everyone else. I "failed" a sweat test and then had genetic testing done. I have managed to stay somewhat healthy thanks to trikafta.

@tinaesims Have you noticed or had any side effects from the Trikafta?

@ckscoville none!

@colleenyoung Hi Colleen, I haven’t been diagnosed with adult on-set CF although I do post about Bronchiectasis from time to time.

Fortunately my oxygen levels are quite normal and I’ve had some infections dealt with by antibiotic treatment, but never needed to be hospitalized. So far, I don’t have NTM disease or MAC.

My BE journey started with an otherwise normal x ray of my lungs albeit some minor inflation or so (I have those images and report). After being denied sputum tests and a CT scan - despite worrying symptoms over the next two years - my doctor finally sent me for another x ray.

Just over three months or so later, the CT scan that a pulmonologist ordered revealed Bronchiectasis. I believe I had infections that weren’t treated properly by antibiotics but my pulmonologist isn’t sure. I have no immune issues, asthma or allergies and have never been given a sweat test for CF. My pulmonologist hasn’t talked about it.

Unfortunately I was gaslit by my doctor. I now strongly urge everyone to get second opinions and be good advocates for ourselves and not just our loved ones!

To be truthful, some primary care doctors need to check their egos a little and listen to patient concerns. Most, thankfully, do a good job considering patient load.

This will be an important forum for this new conversation. All the best!