What is the average life expectancy of untreated mac?

Posted by carolweinberg @carolweinberg, Mar 29, 2023

What is the average life expectancy of untreated mac? I am 76 years old and have decided not to take the antibiotics. I am 5’4” and weigh 100 pounds.
Thanks. Am I going to suffocate to death? What is dying like with this disease? Thank you. Carol Weinberg

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Profile picture for cholash @cholash

@sueinmn FYI….I know you’ve mentioned living in Texas for part of the year. UTSW has an excellent Bone & Mineral Metabolism Clinic that I’ve gone to for many years. They have the DXA , but will also do a 24hr urine collection to see how your body is absorbing critical minerals for your bone health. It’s very comprehensive . Based on results, they will discuss your diet specifics and make supplement recommendations . The first time I went for an appointment , I took my recent bone density test results with me. The doctor chuckled and said UTSW had the best machine , and wanted to scan me again to get results he trusted . Sure enough, the results were different ! Side note on that doctor , apparently he is a genius in the field , and was the one who started the clinic . You may be doing something like this at Mayo, but if not, you may be interested in an appt at UTSW/Dallas while in Texas .
Also , forgot to mention, I have osteopenia that has stayed stable . I also have asthma , sometimes requiring oral steroids, but for the most part maintenance with Trelegy 100 seems to be working .

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@cholash I looked up your UTSW clinic-- do you have a particularly favorite doctor there? I would love to say that my osteopenia is stable but I suspect it's not the case. I'm long overdue for another DXA.

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Profile picture for letsjustbreathe @letsjustbreathe

@cholash I looked up your UTSW clinic-- do you have a particularly favorite doctor there? I would love to say that my osteopenia is stable but I suspect it's not the case. I'm long overdue for another DXA.

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@letsjustbreathe I will include a link . I started with Dr Sakhaee , but after many years have ended up with his NP, since I’ve been stable for so long . She runs everything past him, so I’m ok with it for now. . I keep thinking he will retire , but he’s one of the hardest working doctors I’ve encountered . I’m guessing there may be others that are good as well at that clinic, due to Dr Sakhaee’s influence .
https://share.google/sTTDYRAhbcRA8IXMt

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Profile picture for Sue, Volunteer Mentor @sueinmn

@cholash I am a 500+ mile drive from UTSW/Dallas where I l9ve in Texas, so probably not an option.

But the Twin Cities is fabulous for health care, and we have assembled a great team. Just today, I saw my awesome PT, who changed practices last year, but is still on the same patient portals as my docs. The only downside is that instead of being 4 miles away, he is across the river (traffic issue) and 14 miles away. So instead of early appointments, I now schedule after rush hour and mess up my day. But I forgot how magical his manual manipulations are when I am in pain!

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@sueinmn I could use a guy like that!

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Profile picture for cholash @cholash

@letsjustbreathe I will include a link . I started with Dr Sakhaee , but after many years have ended up with his NP, since I’ve been stable for so long . She runs everything past him, so I’m ok with it for now. . I keep thinking he will retire , but he’s one of the hardest working doctors I’ve encountered . I’m guessing there may be others that are good as well at that clinic, due to Dr Sakhaee’s influence .
https://share.google/sTTDYRAhbcRA8IXMt

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@cholash So glad you mentioned this.
I will be seeing Dr. Jung, pulmonologist this November and am considering seeing if I can get into the clinic to see Dr. Sakhaee.
Good information.
Barbara

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