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MAC treatment do or not do

Posted by Edie @eespoor, May 5 10:21pm

I am 86 and have just been dx with MAC. I would appreciate honest responses please. My pulmonologist is talking starting the 3 antibiotics treatment for 18 months. The side effects I have read about worry me at my age. I also have congestive heart failure. I am fairly active but do get fatigue easily. I am not convinced the side effects are worth the possible cure as I also understand it can come back. Confused

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petry | @petry | May 28 6:40pm
In reply to @eespoor "@petry I fully understand your frustration on what to do or not do. For starters read..." + (show)
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@petry I fully understand your frustration on what to do or not do. For starters read the many comments in this blog. There is a lot of good information and experiences. I made the decision not to do the big 3 for 18 month and I am 86. I feel what time I have left on this earth I want some quality of like even with limitation. Do what path to take that your heart tells you to follow Will be looking for a good report from you !

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@eespoor thank you for encouraging words and I really appreciate finding this support group, I been looking for a support group for over a year , so appreciate everyone input . Living with this can be very depressing, I live alone so I have to consider everything, and ALL my options. Hugs

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cd33 | @cd33 | May 29 12:18am
In reply to @sueinmn "@cd33 This is the point of view we went with when my Mom, at 80+ and..." + (show)
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@cd33 This is the point of view we went with when my Mom, at 80+ and with a laundry list of health issues, had MAC. Her doctors treated severe flares with Azithromycin for 10 days or so to calm them, and she nebbed albuterol daily (before we knew about saline). She lived another 3-4 years, and eventually died of a heart condition.
Ironically, since then my daughter and I have both been diagnosed with Bronchiectasis. Eight years ago, I had very severe MAC and Pseudomonas and endured almost 2 years of antibiotics. For a lot of reasons, my ID doc and I decided to stop treating before I tested completely negative for MAC, and go with saline nebs and airway clearance. I have since tested MAC-free for 6 years. At the time we stopped the meds, he told me "This is a chronic condition that you will live with, but you will likely die from something else."

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@sueinmn this is interesting and I’ve heard from some people who only nebulise saline and airway clearance and then show negative. Good to know it’s the Azithromycin for when it’s flared up too! Cheers

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cd33 | @cd33 | May 29 12:19am

Good questions for my hospital specialist next time we check in!

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sak123 | @sak123 | May 29 1:22pm

I’m 82 and was diagnosed last year with MAC..I too opted not to do the big 3..
I went to an infectious disease dr. He told me most likely I would be pretty sick ..most people have stomach issues..The side effects are horrendous and scary to me..I figured I wanted to live out the rest of my life as healthy as possible..18 months when you’re 82 is a long time maybe all you have left..The fact it can return was the deciding factor for me…I also have Bronchietasis and started on Brinsupri 5 days ago..I have slight headaches but otherwise ok..
Follow your heart..everyone is different..do what you feel is best for you..hugs

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Chattey2 | @chattey2 | May 29 11:06pm
In reply to @petry "I am 85 and was diagnosed with BE 19 years ago and recently diagnosed with MAC..." + (show)
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I am 85 and was diagnosed with BE 19 years ago and recently diagnosed with MAC , i was told I had MAC for a long time . It seems that my last doctor failed me as in the 10 years he never tested me for this infection. My new doctor tested me , and is sending me to a Infectious disease clinic, im not sure that at my age the treament for this is a good option since , I do not do well on antibiotics, i suffer with many gut issues . 18 month of this treatment will seriously effect my quality of life, I been taken D3 and short term antibiotics for years it has giving me some relief, and wonder if this is a better option for me, just how much time do I have left . I belive at 85 you have to wigh your options , 18 month is a lot out of your life if the quality of your day are poor and debilitating. I presently use a nebulizer 4×a day and Aerobike 3x a day and resently acquired the vibrating vest , but my best result is the nebulizer and then lying flat to clean out my lungs . I would love to hear your thoughts.

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@petry I agree. I am 81 and have been fighting MAC for 5 yrs on and off antibiotics. I have decided to save what eyesight and hearing I have left. I have a port and go into hospital and go home with antibiotics for a couple of weeks. To give me a little boost! My veins are shot because of all the iv’s. Wish you well

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petry | @petry | May 30 5:33am
In reply to @chattey2 "@petry I agree. I am 81 and have been fighting MAC for 5 yrs on and..." + (show)
Profile picture for Chattey2 @chattey2

@petry I agree. I am 81 and have been fighting MAC for 5 yrs on and off antibiotics. I have decided to save what eyesight and hearing I have left. I have a port and go into hospital and go home with antibiotics for a couple of weeks. To give me a little boost! My veins are shot because of all the iv’s. Wish you well

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@chattey2 oh you poor lady , im so sorry for your pain , at our age that should not be .
Sometimes we just have to weigh the worth . Reading every one's experience does make me wonder why there is not better options that are less aggressive. This is not the way I want to go . I wish you the very best , and get comfort in your trials.

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