MAC For the Second Time Not Being Touched By The Big 3

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Jun 21, 2021

I am being sent to Mayo next week after struggling for 15 months on the big 3 for the second time with no progress. I am see Dr. Clain. I have not gotten any info on what to expect from this visit. Tests or just talk? Anyway, I have a "cavity" in my upper right lobe that may be the trouble. I am not sure what to expect and I am a bit freaked out. Any comments regarding this doctor and first time visits would be appreciated. Thank you.

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Sue, Volunteer Mentor | @sueinmn | Jun 21, 2021

Hi Carolyn -
I am sorry to hear that your MAC is not resolving, but Mayo is a great choice for dealing with the issue. You have certainly been fighting this for a long time.
The cavity they are referring to is a void in your lung tissue, caused by bronchiectasis or another lung disease. These tend to fill with mucus, which diseased lungs are horrible at ejecting, and then the bacteria settle in for a comfortable life hiding out and multiplying deep in your lungs.
If I remember correctly, you restarted therapy a year or more ago so Mayo's eval will probably be to determine whether there is something other than MAC is growing (more cultures..) and to decide whether to add another med to your regimen. When I was on the Big 3 and not responding, my docs, working with National Jewish Health, upped my dosage of the Big 3 to every day, which mostly knocked down the infection so I can manage on 7% saline nebs. But earlier, they were getting ready to prescribe inhaled Amikacin - so they have some options for you!

Sue