Discussions
Discussions
Seated Check-In 02/18/2026
Hello group. Duly diagnosed after 6 month difficult differential decision making. I qualify for both these diagnoses. I am now in a three month period until my next CT scan and physician appointment. Learning about how little Medicine has to offer as far as patient support and prediction of disease progression. It would seem current education that it's up to me to maintain airway clearance at home with six month CT scans to see if I have Cherry Tree or hand and glove scans. Does that sound like anyone else's idea of future life? Some literature seems to say that I have excellent chance of living another five years, i'm currently 78 year old white male, with hx in 2016 of MRSA pneumonia. (plan to phone patient ambassador line in future)
Replies
Seated,
Yes, it is so frustrating to be a patient with a rare disorder and receive very little or no education on BNTM from your healthcare provider. We must do research on our own, advocate, and empower ourselves through knowledge of these diseases. Airway clearance is of utmost importance. There is plenty of information under the Learn More section in the menu on the upper right side. Do not believe the literature you read about 5 years; many of us have been around a very long time with this disease. I read that I had 12 years when I was newly diagnosed, and that was 23 years ago- I have no intention of going anywhere soon. Please do call into the BNTM patient ambassador phone number when you are up to it. :)
Hi Seated........I'll echo Katie..Don't listen to the 5 years!!! I have moderate COPD and mild Bronchiectasis. I'm 74--I don't plan on leaving here anytime soon!! Learn all you can! Make that call👍
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