Just Diagnosed

I’m in the same boat as you. I saw in the notes from my Pulmonary doctor, that I have nodules too, but he never discussed it with me. I have 2 appointments coming up next week, one with the Pulmonologist and another with my Infectious Disease doctor. I need some answers!

@lisajanemac & @jamesthom101
Welcome to Mayo Connect and the MAC & Bronchiectasis Group - the most awesome support nobody ever wanted to belong to!

Nearly everyone here has been where you are - scared, unsure of what is next, probably wondering "where did this come from?"

I suggest you take a look at some of the resources here to learn more about MAC:
https://connect.mayoclinic.org/member/00-b4b2c4df9c7bfa4e138993/
Has your doctor suggested airway clearance to help clear your lungs fight to the infection?

Sorry to hear about your diagnosis. I have both as well, of I should say “had” in the case of MAC. I was lucky mine was caught in the mild to moderate stage. I pursued alternative treatments for a year, but it got worse, so reluctantly went with the “big three” antibiotic treatment. And I use a Smartvest and nebulizer. And I started a meditation practice to help reduce stress and inflammation. While on treatment, still got pneumonia once, then super bad cough that bronchoscopy revealed to be Serratia, a freeloader, and two freeloader funguses, aspergillus Niger and rhizopus. Yippee. Bronchoscopy showed zero MAC, however after about 7 months of antibiotics. Continuing the antibiotics for at least another 5 months because that’s the protocol - don’t want to stop and then have it all come flooding back. All of the mycobacteria and fungi are “common in air and water” but being affected by them is “uncommon”. So I don’t know how bad your case is, but your MAC can probably be cured. The bronchiectasis is a chronic condition, but you can manage it if you do the work - which I sometimes really resist. Clean up your diet, clean up your thoughts, reduce stress, exercise, take better care of yourself than you ever have before and although there will be ups and downs, you will be fine.

@lisajanemac I have my appointment with infectious disease 9/1. Nurse told me it would be a long one with a lot of details

@sueinmn I have my first appointment with infectious disease on 9/1 so should have some answers as to treatment path then

@marva13 thank you

Having ‘been there, done that’ I echo @marva13 ,s comments. Would just add that mycobacterium is in soil as well. Keep the faith, be diligent, but don’t let it get you down mentally or emotionally. Find new ways to do the things you love. Take good care of yourself. Wishing you well.

@sueinmn how will treatment affect my ability to work? I work from home thank goodness.

@jamesthom101 It depends - if your work is not physically taxing, you should be able to manage. Not having to commute is one less drain on your energy, which often suffers while on the medications.
Even better if your work hours can flex somewhat - when I was on the medications, I "hit the wall" every day around 4 pm, so made sure to have all of my tasks and errands done before that. Other people on the medications find they need a short nap or rest during the day - can your work accommodate schedule changes?

I think Sue meant to direct you to this thread.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/