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So many questions: How do I clean our home to prevent reinfection?
MAC & Bronchiectasis | Last Active: Jan 15, 2020 | Replies (8)Comment receiving replies
Thank you so much for your quick reply and your comforting words. Andy has always been pretty healthy and did not have any other conditions or take any medications until now. He has always had sinus issues with drainage and a clearing cough, but nothing that really stood out or disrupted his life.
He began to lose weight, tire more easily and cough more. He was on the cusp of being anemic. His doctor ordered tests and a bronchoscopy to check for lung cancer. There was no cancer but there was MAC in his left lung. His pulmonologist is Dr. Dragos Zanchi. He put Andy on the nebulizer(7% sodium chloride) and the compression vest and sent us to Dr. Emilio Jose Vasques at Brandon/Tampa Infectious Disease. Andy received 2 months of IV amikacin, oral linezolid, ciprofloxacin and azithromycin. Thursday was his last dose of amikacin and linezolid. There was one other person at the same IV time as Andy that also was being treated for MAC. We weren't given much information. We actually thought that everything would be fine once he finished his rounds of antibiotics. And then I got on the computer.
Andy is fortunate that he has not lost his appetite. It is a relief to fill him with healthy, nutritious foods. He has lost some of his hearing, which I am told is permanent. His thighs hurt and he is so tired that it has been making any yoga or walking difficult. He is trying though. I am trying to tweak his med times so that maybe he is actually in bed asleep through at least one of the roughest patches.
Do you do anything special for brushing your teeth? Do you use a dishwasher, would that be safe?
Replies to "Thank you so much for your quick reply and your comforting words. Andy has always been..."
@sharingiscaring I, too, have lost some hearing. Hoping to get hearing aids soon. It's a tough disease, you have to work at feeling better. Good tips on this forum. Wishing you well.
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Glad to hear he has his appetite. Have the doctors indicated whether he has bronchiectasis with the MAC, or given you any idea how much longer he will be on meds? Do you know if the doctors submitted a sputum culture to determine which drugs were effective for his particular strain of mycobacterium? Most protocols call for the oral antibiotics for a year with periodic sputum tests to see if the infection is gone. I would also be sure his doctors know about the leg pain - I had a similar reaction years ago which indicated I was overly sensitive to a specific med (this was unrelated to my MAC) and they had to use something else.
I do not worry about drinking water, brushing teeth, etc. Absent swallowing or aspiration problems, MAC doesn't cause issues through the stomach, where digestive acids destroy it.
I use the dishwasher - mine superheats the water enough to kill MAC. I never heard anyone recommend against it.
You are right to try adjusting med timing to minimize symptoms. I took azithromycin, rifampin and ethambutol (known on here as the Big 3) for 18 months. Ideally it would have been one med at night and two in the morning but I would never have finished the regimen because I was so miserable. With my doctors' blessing, I took all three at night, just before bedtime, and managed to mostly sleep through the nausea and stomach pain.
There is a lot of really good information available through National Jewish Health, I will give you a link tomorrow because I cannot find it just now.
Keep hanging in there. As far as I have heard Amikacin is a very tough med, so now things may begin to improve.
Sue