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MAC & Bronchiectasis | Last Active: Mar 8 1:16pm | Replies (55)

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@sueinmn

@mary80 Are you beginning to see that many of us live full lives with these conditions? When I was at my lowest ebb emotionally, my ID doc sat me down and said "This is a disease you can live with. It is exceedingly rare to die from it. Take reasonable precautions, then go out and live your best life."

That was 5 years ago, I stopped the meds over 4 years ago. A year later, my trusted PCP repeated the message and pushed me to form a Covid bubble with family and a few close friends instead of being totally isolated. But I still keep my asthma tightly controlled, do daily airway clearance and use 7% saline a few times a week to keep down any germs.

I am past 70 and have had lung issues for many years although I was not diagnosed until 6 years ago. I have had only a few exacerbations in the past several years - in spite of Covid, travel, and spending a lot of time with 2 young grandchildren. By the way, I could run with them when they were small, but they are too fast for me to keep up with now - but we still climb rocks and do many other activities together.

Hang in there, it gets easier to manage as you learn how your body handles things. And stay away from websites and Facebook pages that make you fearful. You can find great information here and on some other research-based sites like NTM Info (https://ntminfo.org/what-is-ntm/)
Sue

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Replies to "@mary80 Are you beginning to see that many of us live full lives with these conditions?..."

@sueinmn , I'm worried because I’m 44 years old and a long war awaits me... assuming I manage to get cured with a long therapy, then what kind of life will I be able to have? Given the fact that we are talking about ubiquitous opportunistic germs, the possibility of catching them again, sooner or later, is almost a certainty. I live in the countryside and I am surrounded by land. The wind or a tractor plowing the fields raises mountains of dust... should I leave my house and move to the city? But the risk is still there, with tap water, water vapor, the shower head... Should I boil the water before drinking it? But what if I wash fruit, vegetables, or brush my teeth? And if I go on holiday how can I do with the water? I will never be able to go to a thermal pool, etc... it seems like a losing battle because too much effort has to be made to protect oneself, with absolutely no guarantee of success. and if you let yourself be influenced so much you can no longer have a normal life...