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Anyone have cavitary MAC?

MAC & Bronchiectasis | Last Active: Sep 12, 2023 | Replies (67)

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Hi Maureen,
Welcome to this wonderful group. I have only been following MAYO Connect for a short time, after floundering around the digital world looking for answers to my ever growing pile of MAC questions.

This discussion site has a wealth of information provided by an informed and empathetic group. The turnaround is amazingly quick for replies to questions, group welcomes, and fast connections to others with similar experiences and/or common issues.

My husband Bruce has cavitary MAC, finally diagnosed in September 2021 following several years of escalating symptoms. He has a large cavity in the lower left lung presumed to be caused by percolating MAC bacteria.
Bruce also has Bronchiectasis.

He uses a couple of inhalers, a nebulizer two times daily with 7% sodium chloride followed by the Aerobika, plus the Arikayce nebulizer every day.

He is also on the 3 biggie oral antibiotics - Ethambutol, Rifampin and Clofazimine, the latter substituted for Azithromycin after it failed sensitivity analysis to Bruce's MAC bacteria. He's had several negative cultures mixed with a positive and has lots of side effects both from the heavy duty antibiotics and the MAC.

He coughs a lot, bringing up significant amounts of sputum daily. He has never had a fever but there has been a significant and debilitating uptick in shortness of breath since he started the MAC treatment. Other side effects include weight loss, lack of appetite, foggy brain and confusion.

Bruce, who is originally from northwestern Minnesota, is currently being treated at Johns Hopkins Bayview which is east of Baltimore in Maryland (where we live), by an ID/Pulmonology Critical Care team who specialize in NT MAC.

As his caregiver I manage his medical situation, monitoring meds and treatments, attending medical appointments with him, handling follow up, and asking lots and LOTS of questions. 😉

All the best with your MAC treatments. It sounds like you are on a road to feeling better.

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Replies to "Hi Maureen, Welcome to this wonderful group. I have only been following MAYO Connect for a..."

Hi Melissa,
Thanks for sharing! I am sorry to hear that Bruce also has cavitary mac. So interesting that once he started the big three he also starting having more shortness of breath. I also feel different since starting medicine. Coughing only started once I took the meds. I appreciate all the information. Looking forward to engaging with the discussions! All the best. Bruce is lucky to have you caring for him.