Hi @rosecurran I remember the confusion when I was diagnosed last year. I was diagnosed with MAC, bronchiectasis and a couple of cavitary lesions (holes in the lungs). I’ve been a runner and a former triathlete and have always been super healthy so I was floored! I can only speak for myself as I am definitely no expert on this disease.
Was your mom also diagnosed with Bronchiectasis? After research, I learned that while the MAC infection can be arrested with the meds, bronchiectasis is with us forever.
I was put on Clofazimine because I didn’t tolerate one of the meds. So, if she is tolerating the 3 meds okay, I doubt she’ll take that.
For myself, I did nothing special. I took the meds and did my lung clearance (which is for life if a person has bronchiectasis) and tried to get some exercise because that is good for the lungs. Because of the cavitary lesions I also was put on a drug called Amikacin, first by IV with a PICC line and then inhaled. My first sputum culture after 3 months came back negative and all sputum cultures after that came back negative also, although that is not the case for everyone. I stayed on the meds for a total of 15 months.
I have been off meds since April this year and doing pretty well. Started working out again although lately I’ve been rather lax (note to self: get back to it). Right now I’m going through some sort of little thing but lungs look no worse so I take that as a win. I am still adjusting to my lungs never being ‘normal’ and trying to be satisfied that there have been no negative changes in my CT scans.
So, all in all, it is a long learning process and a new normal. I just turned 63, by the way and was 61 when diagnosed. I’m sure others will chime in here. Best to you and your mom.