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@pjas972j

Sue,
Please accept my condolences regarding your cousin. It must have come as a shock.

Re: the "coming with a survival rate" comment: maybe I'm confused. I read in several places that MAC patients have a 75% chance of living 5 years or more. I also read a paper from a researcher who said that 27% of MAC patients died within 5 years. Granted, like any study, there could be flawed data. The ones I read were published within the last 5 years. I'm sorry that I didn't save the links. Any insights? I'm within my first month of diagnosis so this is all new to me. Thanks

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Replies to "Sue, Please accept my condolences regarding your cousin. It must have come as a shock. Re:..."

Thanks for your kind words. It was better this morning, as my brother and I had a few minutes alone together to remember her.

As for MAC mortality reports, like everything else, I think "the devil is in the details." If you dive deeply into the studies (most of which are not actually full research projects, but rather a compilation of studies from a variety of sources) you can see that there was limited follow up, or limited differentiation between different strains of NTM, and in some cases, little evaluation of comorbidities or other infections. For example, one study in England had a high mortality rate in males over 65, who had Mycobacteria xenopii, cavitary lung disease and other comorbidities. In addition, they did not differentiate between those who died of NTM and other causes. A number of studies have concluded that the mortality rate for NTM is much higher in men than women. So maybe your picture is not so scary after all?

If you want to take a "deep dive", this study report shows survival 5-15 year survival rates of 4 types of NTM, considering both variety & seriousness, as well as underlying factors. https://erj.ersjournals.com/content/55/1/1900798

As a 70 year-old female with non-cavitary MAC, my 15 year survival rate is estimated to be 75%. My Mom had bronchiectasis, lung infections & other lung diseases for many years, but died at 84 of heart disease. Based on a common longevity calculator, using my demographics, I have a 75% chance of living to age 87 - hmm, looks very similar.

Living in a winter community of seniors, many of whom have serious health problems, I have concluded that we each have our own challenges to face, but in the end we live the best life we can and just keep going...

All of that said, I hope you can find comfort in knowing we are here to support you on this journey into treatment for your infection.
Sue