MAC - To treat or not

Posted by carolinediehl @carolinediehl, 6 days ago

I recently came down with an atypical pneumonia of both lungs caused by pseudomonas aeruginosa. Was treated for 14 days with cefepime. This all happened while I was away from home. The pulmonary doctor in the hospital suggested I talk to my pulmonologist when I got home about the possibility that in addition to my long standing fairly well controlled bronchiectasis, I might also have MAC. I also have RA taking Humira and am therefore immune compromised. 14 days of IV cefepime worked wonders until I finished the treatment. No more coughing or mucus but my breathing has gone downhill since. From seldom needing to use 3L of O2 to almost constantly needing. I'm a 75-year-old female. I went from one small nodule in my right lung (for the past 3 years with no change) to multiple nodules in both lungs. I asked him if I might have MAC and he pretty much cut me off by saying "your too old and frail". He went on when I pressed him on it to explain that the success rate is like 60% at best and many cannot tolerate the treatment. That and the fact there is no guarantee you won't get MAC again. I just want my life from 4 months ago back! Will all these new nodules heal? Is it not a good idea to treat IF I have MAC? We haven't even discussed a bronchoscopy.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@busybeans

I live in the southern part of the state. How I wish Mayo in Scottsdale had an NTM clinic. They do not. I'm sure they have reputable physicians but none with the NTM specialty (that I know of...if anyone does, please let me know). They do have NTM clinics in Jacksonville and Rochester. As a result, I travel to National Jewish in Denver twice a year. I've been doing that since diagnosed in 2010.

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While Scottsdale Mayo does not have a clinic, Dr. Gilbert Ortega joined the pulmonology staff in 2021. I had my first appointment with him yesterday. He has expertise in diagnosis and management for bronchiectasis.
https://www.mayoclinic.org/biographies/ortega-victor-e-m-d-ph-d/bio-20520652
Scottsdale Mayo also has an ID doctor now who treats bronchiectasis and MAC , Dr. Jamilah Shubeilat.
https://www.mayoclinic.org/biographies/shubeilat-jamilah-m-b-b-s-m-d/bio-20535842

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You can also see what tests are scheduled on the My Chart portal. After the first day they may add or subtract different tests depending on the results of the first tests and exams.

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