@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!

@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 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!