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Tell us how you "Live Life Fully" with Bronchiectasis and MAC
MAC & Bronchiectasis | Last Active: Jun 27 7:01pm | Replies (55)Comment receiving replies
@blm1007blm1007
I was diagnosed with MAC in 1997. I didn’t hear the term bronchiectasis then… the focus was on clearing the infection, and then dealing with subsequent infections. I wish I’d had a better picture of what I was dealing with and what the long term consequences might be.
Cough varied with the status of infections but a persistent productive cough has been present since @2003. I’ve had a spit bowl for at least 20 years. I’ve been colonized with pseudomonas bacteria for about 15 years, treating with various antibiotics. A course of antibiotics would reduce the severity of the cough but it was never entirely gone until last month, when I started a new program of nebulized Tobramycin. It has been amazing, I’m enjoying the freedom but not expecting it to last forever. The bronchiectasis as still a reality and I expect to continue to experience other infections over time.
Meanwhile I continue with my vest, medications, and other measures to keep the airways open.
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@mffox Thank you for your response.
When I was told I had BE I had not heard of it as many of those I talked to about it had not heard of it. Several nurses had not heard of it and this was in August of 2022. Then a new neighbor moved into the neighborhood and her husband had it along with other serious problems.
Since 1997....that's a long time and has required much of yourself.
Oh, pseudomonas...I have read enough on Mayo to know it is hard to control.
Glad you are experiencing a change for the better with Torbramycin.
"I expect to continue to experience other infections over time". That weighs heavy on my mind ....it's not if it is just a matter of when,, ,,more than likely find it's way to me. I have had the intracellular for a good few years, so far nothing else has showed up.
I think those who have had BE for a long time, when not much information was available, caused many to suffer with pseudomonas.
Hoping I can keep my airways open for a good while yet. So far PFT is good and no wheezing or crackling heard in the lungs.
Barbara