Rvan, there are many friends within this forum that have clinical knowledge, personal experience, and amazing minds. I too am a newbie, an apprentice here; I too was diagnosed back with late onset “adult Asthma” ( I am sure a created label) in 2018 although never found in my family tree nor with the typical characteristics. I was diagnosed with MAC after the Bronchoscopy Oct 3, 2020 when AFB lit up immediately. My very cherished Pulmonary Dr (who assured me has much experience treating MAC) calmly and lovingly explained that “presently the course of treatment” is mapped by the patients condition, symptoms, overall health with any and all comorbidity. Even “weight” was a factor...low BMI means more chance of progression. So the facts cards were lay down on my mental table, deck stacked, and the decision was mine. I could “draw” and “stay in the game”....start a treatment that has NO guarantee...but is the course offered (the game), or fold (as many do and have...which my doctor loudly pointed out to me...BUT...there is always a but) and do nothing right now. As you can see, I am a real card player...Canasta as a child Bridge as a mature Woman...so...I checked my hand and reviewed the table...here now comes the BUT...
“What is my life...the minutes and hours of participating on this planet...with the persons I love and care about...with what I can accomplish, offer, and leave behind...worth to me? Or “NEED to be for me”? My personal answer...and everyone on this forum will have there very own version of this answer....BUT my answer is I must have the quality of time existing...that allows me to have that time to love and be present. So, rvan, the BUT for each of us will be different...you will need to ask yourself “what are YOU willing to do about your situation?”
The doctors will offer the best they have today...these lovely friends of the forum can share their thoughts...but only you can determine the best treatment for you. Mine was a very quick decision; the drugs are an arduous path to long chemical therapy, with no guarantee...my pains, weight, fatigue, lack of air, all are unacceptable conditions for me to exist in companionship with my world, so I chose the drug therapy and am grateful that I could make the choice. I am on my second month of the cocktail of 3, have my energy back, can breathe, pain diminished, my family and friends quit whispering about me behind my back (pure love and fear), cannot produce any sputum (a variant of MAC/Lady Windermere Syndrome) so must hold my hand close to my heart and draw and discard each and every day. I draw...on my gratitude...and I discard my fear.

I wish you the best of luck and wisdom in making your decision.
Be well,
Regina

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