I am now 70 years old. I have been an athletic person my whole life. I am also a big gardener and had a horse ranch in California for 22 years. I have had a cough my whole life. I moved to Florida in 2019 and I was diagnosed with MAC and Bronchiectasis in Dec of 2022. I was started on Clarithromycin, Ethambutol and Rifibutin. I was so sick the first two weeks, I thought I was going to die. Every time I ate, 15mins later I had the worst pain in my stomach and couldn't move. At my doctor's suggestion, I started taking only one drug at a time to see which one was making me sick . We determined it was the Rifibutin that was making me sick, and I was put on the Rifampin instead. The Ethambutol was 3 times a day, the other two twice daily. I had no problems with those three and was on them until June or 2024. I had numerous CT's and sputum tests during that time. I had 2 negative sputum tests, then they all started being positive. I also had cavities in my left lung that were getting bigger. My doctor told me the drugs were resistant to the MAC so we needed to do something else. I got a picc line and did IV Amikacin twice daily and Imipenem Cilastatin 3 times daily. I did these infusions myself and had bloodwork done weekly. I had no issues with these drugs. Through all of this I can honestly say I never felt that bad. I did have some fatigue by the middle of the day, so I would just take a nap. I continued to work part time and walked at least 3miles a day, exercised, rode my horse and played tennis - yes, with a picc line. After 4 months of the IV drugs, I had a negative sputum test! Progress! But, my doctor was worried about the cavities because one had gotten larger through all of this and referred me to thoracic surgeon. He suggested robotic surgery to remove the cavity because he thought it was harboring the bacteria. My pulmonologist agreed. I was very much on the fence about doing the surgery but went ahead with it. 3 days in the hospital, I have never had a major surgery before, and recovery for me was slow - I wanted too much too quickly. I was back walking after a week, but getting back to my normal routine took at least 4 weeks. My pulmonologist told me he wanted to put me on another IV drug, (I forget the name) along with an oral -Linezolid, after the surgery. He said it would be for 12 months - after I had 3 neg sputum tests. All of the pathologies from my surgery came back negative. So that gave me 2 neg tests. I told my doctor I would give him 6mths of the IV drugs, but if my 3rd test was negative, I would do IV drugs for 3 months and the oral for as long as he wanted. I am still waiting on the test results, which I should have in a week. I never started the IV drug, because I found out my copay was $653. 00 for 8 days. I told my doctor there was no way I could afford that, so I wanted to get my picc line taken out. Since my surgery, I have been on just the Linezolid.
The one issue I have now, is I cannot seem to gain any weight. My appetite has not changed, and I am trying to eat more protein. I was at 124-126, now I am at 117-119, which is not enough for a 5"8 person. I have always been thin, but this is too thin. Otherwise, I am feeling good.
This disease is hard to deal with, because the treatment is so long. But you have to be your own advocate. Ask questions and get other opinions from other doctors. My pulmonologist had not dealt with MAC before. He told me he had never worked so hard on a case. Looking back, would I say yes to the surgery? I'm not so sure. Linezolid is not an antibiotic that cures anything but make the bacteria unable to reproduce. So if MAC is still hiding somewhere in my lungs, hopefully it won't get worse. That's my story.