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← Return to Options if MAC goes untreated
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Hi friends -
I was diagnosed about 18 months ago with Bronchiectasis and MAC. I’m 61 years old and otherwise very healthy. I have a wonderful doctor at Mt Sinai in NYC and I am doing airway clearance two times per day, I take NAC two times per day, I eat a healthy diet and get moderate exercise (I should do more). I boil all of my drinking water for 10 minutes. I don’t shower and instead take shallow baths. My scans have not gotten worse, and if anything have improved a little bit. I am pretty much asymptomatic. No one would ever know that I’m sick. Sometimes I get tired in the afternoon. I test my sputum monthly and I’ve had two negatives in a row on occasion, but never three in a row. I am discouraged because I thought I was on an upward trend of negatives and now they are coming back positive again. My question is, how long can I continue with this “treatment” plan. In other words, is there some point at which the doctor might say, “The steps you’re taking are not getting you better and we have to add antibiotics?” Or should there be some point at which I say that for myself? I guess what I’m asking is can I just continue to live this way indefinitely, with a MAC infection in my lungs? How long can we live like this? Thank you all so much for any guidance or perspective.
Replies to "Hi friends - I was diagnosed about 18 months ago with Bronchiectasis and MAC. I’m 61..."
I think this is a question many of us wish there was a definitive answer for. I think we would get a different answer to your question from the professionals and those of us here on this site. I also do as you do, boil all water, limit my showering to enable the shower head to dry out, keep the hot water tank over 150 degrees, removed all faucet strainers etc. etc.
My one symptom, clinical, is the constant need to clear my throat. No fever, chills, fatigue, very much good to go all day long etc. etc. and gaining weight at this point and blood tests all good so far. My sputum vile tests DO/DOES come back with MAI, the October C Scan shows two areas of improvement and one new area of mucus plugs...no cavities. My BE specialist wants me to start the two antibiotics vs further watchful waiting. . I am able to clear out mucus and mucus plugs...no problem so far getting all this up and out. I am 82....hard to believe however.
I am on the verge of possibly starting them just to see if they will help this need to constantly clear my throat of sputum....yet....I hesitate also but fear what could happen if I don't or do take them and some other illness takes hold of me also....flu, pneumonia, Covid etc. Then what in terms of medications and antibiotics.???? I do mask nearly all the time outside my home with an N95 mask and worry when going to the doctors office, for example, and you have to remove the mask for various "look/see" reasons by the doctor who sees all patients all day long all week long. Oh well.
Yes guidance and perspective is always good to hear from others in view of decision making.
Barbara
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Are you using 7% saline nebs before airway clearance? This is thought to reduce the growth of MAC.