← Return to MAC/NTM is Different for Everyone, Treatment might be different too

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@cwal

Your three mantras (except I still fear if I ever have to do the Big 3) are what I've come to realize myself after much worry and self doubt. I had to live and learn this stuff for a while to understand it, and I had to wade through it myself without the good guidance that should come from our physician. The information on this site and my own knowledge search has proven well. Thank you Sue.

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Replies to "Your three mantras (except I still fear if I ever have to do the Big 3)..."

I may come from a slightly different perspective, where I do not expect the physician to provide much detail - that used to be the province of the "wise and loyal staff nurse" who has gone the way of the neighborhood druggist, the milkman, and the mechanic in the corner gas station.

I got my best instruction on airway clearance, sputum samples and other things MAC from my first pulmonologist's experienced RN, who he was only able to keep by threatening to quit our clinic (both have since retired.)

Now I go to a "specialty center" within our network, where there is one respiratory therapist for five docs, one RN and one PA to assist them with all that must be done. The nurse and RT earn exactly half of what they would be paid in the hospital, so needless to say, there is often turnover. The PA's generally only stay until their "spot" opens up in medical school. And the doc is allotted 30 minutes for each patient -including a pre-read of often extensive medical history and completing their notes (one hour for an initial consult, 20 minutes for a "simple follow-up").

I am fortunate to have this forum, ability to sift through technical research, and the time to do it.

Please understand that the "Big 3" are less scary than cancer treatment, life with diabetes, and many other conditions. No denying it's unpleasant, but the alternative of losing lung function or even part/all of a lung are far worse.

Is airway clearance working for you to keep the infection tamped down?
Sue