I have been my mom's caretaker since 2019 when she was put onto hospice because of her MAC. She had so much pain that it could not be controlled. Fast forward to now. She's nearing the end of her life, after coming off of hospice after 11 months and fighting so hard. She has end stage COPD along with her MAC. We had got the MAC to go away at one point with just azithromycin and ethambutol because she couldn't tolerate arikayce, amicaycin, rifampin or anything else. Now it's back with a vengeance and the pain that comes along with it, is so severe for her because of the lesions it creates. Amicaycin is great for MAC because MAC creates a hard shell over itself on your lungs while it eats at your lungs. Amicaycin softens that shell so the medicine can get to it. However, with her having COPD/emphysema so bad the amicaycin was putting too much vapor in her lungs and making her feel as if she was drowning. Her pulmonologist said that wasn't true but we had an ER dr xray her lungs as she did a treatment and they saw what she meant. As for the pain, the pain meds she gets don't help these days. She's battled hard and lasted longer than doctors ever expected. She was on the transplant list for new lungs but since her MAC came back, she's deteriorating faster so they removed her. She still wants to fight and I will give every ounce of myself to help her do that.