@suzylulu I just came across this site just doing a random search on coughing up blood. I just turned 26 and I have had MAC for 6 years now. The first 3 years it was not properly diagnosed and I had experimental surgery (lobectomy). I was fine for two years after that until I relapsed in October 2016. Because the docs here in Toronto did not know it was MAC at the time, I did not take any sort of antibiotic post surgery which I’ve been told now that I should have been. So after my relapse in October 2016 I was officially diagnosed with Mac and put on a concoction of 3 drugs like yourself. Azythromycin, ethambutol and rifampin. Let me tell you, I felt so sick. I was so sick to the point where I could not function at my job, I was so fatigued that I was falling asleep at my cubicle. I experienced severe fatigue to the point where I did not want to get up to use the bathroom, severe nausea and dizziness I had to be on my back at all times, and severe headaches. It’s weird because my pills also made me unaware of how much I was eating so I gained 50lbs because every time I ate I did not think I was full. I a had to take these meds for a year. Then I was put on a picc line of amikacin because those meds were not working as quickly as my doctor would have liked. The picc line worked extremely well and in May 2018 after being on that picc line for 8 months it decreased the size of the mass of Mac in my lung quite a bit. Then I did the stupid thing of getting my picc line out in May because my wedding was in September. So since May to September 2018 I had no picc line AND I made the decision to stop ALL medications. During those months I healed and when I say I healed I really healed. I had a follow up in August a mo th before my wedding and my CT scan showed that the Mac decreased size by 75%. It went from being 8cm to 3cm. I don’t know why I healed on my own that summer I honestly think it was all the vitamin D but that was very short lived. When the colder mo this hit I went downhill.
I don’t know if any of you with Mac have experienced this but when I cough up blood I know I am relapsing. I call these episodes “coughing spells” I will be fine one minute and the next I will feel a rush of liquid come up from my throat and it triggers me to cough and all of that liquid is blood. Not mixed with phlegm, it’s just pure red blood and it’s so bad I feel like I am drowning because I can’t catch my breath. My episodes in 2017 have been particularly bad I’m talking a cup of blood. I think I only relapsed once in early 2018. So post wedding I could feel myself going downhill again, so I go to my doctor for a follow up and cat scan shows it got worse and so I’m back on my pills but now it’s clarythromycin, ethambutol and clofazimine as well as a amikacin through a vaporizer.
I am due to have my second lung surgery in April and Im quite scared for it because I have had a traumatic experience the first time, super painful, INCREDIBLY nauseous I was dry heaving once every two minutes for 5 days straight.
This disease is no joke. I hate feeling sorry for myself and I’ve never talked to anyone who has this so it’s nice to come across this forum.