Hospitalization on MAC
Hi all, I am terrified to be on here but I need help. My mom has MAC and has been taking the MAC meds and Arikayce for a few months and it’s been hard to say the least but for a bit, we thought things were improving. Due to getting sick a little over a week ago, we went to ER and she has been admitted.
There seems to be rapid decline of lung function and respiratory. I am trying to hold it together and get help or more info because all nurses and doctors in ICU seem really unfamiliar with MAC and didn’t event carry Arikayce meds. They advised us to bring it and continue treatment.
While we have been here, they are administering 5+ abuteral treatments a day and during morning, it seems to help but the nights have been bad to pit it mildly. They keep asking about intubation and advanced directives and keep administering morphine for
pain and Tylenol for fever.
I know we need to get over the rough part and am praying we do. The fever needs to break, and I know oxygen use may be permanent moving forward (oxy was as needed before) but I’d rather that than the alternative.
I need to know, should we be discontinuing the Arikayce and other MAC meds at this time? To focus on breaking fever and getting to better quality of life for the time we do have?
I know the MAC meds can be very much like chemo with harsh side effects. So should we stop? What could help right now? The day was really good and I just want to get back there.
Any advise would truly help.