1. < MAC & Bronchiectasis

Newly diagnosed with MAC and Bronchiectasis. I have questions!

Posted by loreofox80 @loreofox80, May 18 2:08pm

I am 80 years old, female, marginally good health. I am terrified of the side effects of the 3 antibiotic 18 month treatment and need to make a decision soon about doing the treatment or going to the "watchful waiting" plus lung hygiene strategies to move the infected mucus from my airways.

1. Could you share which option you chose treatment or watchful waiting and how its going.
2. Could you also give me a ballpark figure of your age if that is comfortable for you. I am wondering if age was a factor in your choice. Much appreciated!

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loreofox80 | @loreofox80 | 2 days ago
In reply to @payette78 "My pulmonologist ghosted me after referring me to the infectious disease doc so I have only..." + (show)
@payette78

My pulmonologist ghosted me after referring me to the infectious disease doc so I have only an Aerobika for airway clearance. I may not be able to tolerate the treatment and from what i understand with my m abscessus subspecies abscessus the best i can hope for is containment. I have a devoted husband who is supportive of whatever i decide but i figure i owe it to us both to at least try the treatment. If you are as blindsided as i am by this i am truly sorry. I am new too and don't have any wisdom gained from experience to offer. There are lots of terrific and helpful people online here. Try some keyword searches. There is a ton of collective wisdom and empathy. All the best to you.

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Hi Payette, I too am torn about treatment or no, as I said. I am leaning to no treatment. My hearing keeps getting worse all by itself. The two hearing professionals I see both said consider not doing the treatment. I will not choose two make myself deaf and I will not choose to impair my vision reversible or not. I am studying the breathing techniques and trying to do airway clearance techniques as best as I can--huffing, controlled coughing, gentle pounding of the chest. I am doing interval stationary biking for my lungs, walking at least 3 miles or more a day. Learning how to hock for best results. I am willing to do that and more daily to live as long as I can with the best quality of life possible. Good luck in what ever choice you make. Thank you! keep me posted. Nancy

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2 replies
payette78 | @payette78 | 2 days ago
In reply to @loreofox80 "Hi Payette, I too am torn about treatment or no, as I said. I am leaning..." + (show)
@loreofox80

Hi Payette, I too am torn about treatment or no, as I said. I am leaning to no treatment. My hearing keeps getting worse all by itself. The two hearing professionals I see both said consider not doing the treatment. I will not choose two make myself deaf and I will not choose to impair my vision reversible or not. I am studying the breathing techniques and trying to do airway clearance techniques as best as I can--huffing, controlled coughing, gentle pounding of the chest. I am doing interval stationary biking for my lungs, walking at least 3 miles or more a day. Learning how to hock for best results. I am willing to do that and more daily to live as long as I can with the best quality of life possible. Good luck in what ever choice you make. Thank you! keep me posted. Nancy

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Walking 3 miles plus stationary bike. That's impressive. Sounds as if you are doing all the right things. I hope they all work together to help you thrive. Live long and prosper!

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jotansella | @jotansella | 1 day ago

I too have been diagnosed with MAC (Oct 24) and chose not to do the big 3. I have too many other issues going on (kidney stage 3, stenosis resulting in neuropathy in hands and feet, etc). I am 72 years old and made the decision to do all other methods for air clearance and avoidance of pools, ect. as I do not want to face all the side effects that the big 3 bring on. So far my pulmo and ID doc are OK with my decision. After all it our decision to make. Good luck to you!

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karissy | @karissy | 1 day ago
In reply to @loreofox80 "Hi Payette, I too am torn about treatment or no, as I said. I am leaning..." + (show)
@loreofox80

Hi Payette, I too am torn about treatment or no, as I said. I am leaning to no treatment. My hearing keeps getting worse all by itself. The two hearing professionals I see both said consider not doing the treatment. I will not choose two make myself deaf and I will not choose to impair my vision reversible or not. I am studying the breathing techniques and trying to do airway clearance techniques as best as I can--huffing, controlled coughing, gentle pounding of the chest. I am doing interval stationary biking for my lungs, walking at least 3 miles or more a day. Learning how to hock for best results. I am willing to do that and more daily to live as long as I can with the best quality of life possible. Good luck in what ever choice you make. Thank you! keep me posted. Nancy

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You think the way I do. They have just discovered macular in one of my eyes. With the treatment, I could lose my vision and that’s not a risk I wanna take. I know exactly what you mean. Quality of life means a lot. God bless you and I wish you all the best.

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payette78 | @payette78 | 7 hours ago

I have just discovered a middle way from AI (Claude and ChatGPT). Not medically verified so doctor discussion necessary: less aggressive treatment with only oral drugs. Designed to suppress not cure but should maintain better quality of life. Black box FDA warnings on Amikacin (hearing) and Tigecycline (death) have me scared. Apparently Amikacin can cause hearing loss after treatment is discontinued with no warning signs during treatment. Does anyone want to weigh in on this?

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