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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@turnbacktheclock

Thank you, Sue.
Yes I am recently diagnosed with BE. I am scared, no, I’m petrified, of getting the germs. This support group has been a godsend.
J

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Replies to "Thank you, Sue. Yes I am recently diagnosed with BE. I am scared, no, I’m petrified,..."

Deep breath! I was terrified too when I was diagnosed over 4 years ago, after 2 years of not knowing and being constantly very sick - I had MAC & Pseudomonas as well as Bronchiectasis and went through antibiotic therapy. I stopped them after 18 months even though my sputum culture still said I had MAC, and switched to rigorous airway clearance and a healthy lifestyle. I am still doing fine, almost 3 years later.

My ID doc gave me the best advice ever "Bronchiectasis is a condition you learn to live with. Germs are everywhere; the only way to avoid them it to live in a bubble - and that's not really living. Take prudent precautions and get on with living your best life."

The most important thing I do to stay healthy is airway clearance. It keeps mucus from settling into my lungs and creating a warm, moist environment for germs to grow.

Have you been advised to do airway clearance? If you are not infected now, it is probably the most important step you can take.
Sue