New CT Scan shows MAI, Bronchietasis, Centrilobular Emphysema

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

Thanks, Sue! I appreciate the information. I am honestly not scared, just trying to understand what I'm facing. I'm very thankful for the resources here and the ability to peek over other people's shoulders, so to speak, and see how they are handling their journey. We live in an all-year-round senior community in Illinois, so I understand what you mean about everyone having their own challenges. When we were first married and lived in Pennsylvania, our 70-something year old neighbor said, "If everyone had to take their troubles and throw them out onto the street, then you had to go pick one up, most of us would go pick up our own." Not true for everyone, but there is some truth there. 😉

Thanks Sue for the above article. Interesting info. They mentioned avium intercellular as being different than avium and actually not as good. I am a bit confused because my sputum came back first time avium and the second a. Intercellular. When i asked are they different and they said no its the same.
In the article they seems to make it different. Any thoughts on this i would appreciate. Thanks miriam

Mycobacterium avium and Mycobacterium intracellulare are so similar that they cannot be distinguished from on another in the lab culture, they diagnosed by genetic testing. They are collectively referred to as MAI (m. avium intracellulare) or MAC (m. avium complex) or NTM (mon-tubercular mycobacterie)

This recent article may tell you more than you ever want to know about MAC: https://www.ncbi.nlm.nih.gov/books/NBK431110/

So the final answer is, yes they are different, but the treatment is the same,
Sue