I was diagnosed with bronchiectasis in 2015 and MAC, along with H-influenza, in December 2022. Treatment for H-flu improved fatigue and greatly. At that time I started nebulizing saline and using the Aerobika twice daily, but resisted starting the Big Three. My pulmonologist referred me to Dr. Winthrop, ID doc at OHSU, who put me on a Clofazimine study. I got the placebo, but cough and fatigue seemed more better than worse and my CT’s were basically stable. I’d found this group plus other information and had all the concerns about avoiding exposure to NTM, looked into water testing, carried my own water and a SteriPen for purifying water when I was out, was careful about sterilizing equipment and all that. Dr. Winthrop seems to be more casual about all of the precautions than some, saying, “You’re not going to avoid all of it. You’re going to be exposed. That’s what the airway clearance is for—prevention.”

I use my untested well-water for everything without treatment. I soak my Aerobika and nebulizer in soapy water while I boil water for 5 minutes for the final rinse. (Dr. W is definite about the boiled water for that final rinse, but says five minutes is plenty.) I was sterilizing equipment once a week, or every other week in a microwave bag, but have gotten very lax about that. Not only because of Dr. W’s attitude but also because of the studies that showed avium didn’t grow on the equipment even after it had been thoroughly exposed to avium cultures.

I take short showers with the door and/or window open and fan on. I’ve gotten more casual about drinking water in restaurants and other homes.

I try to walk 5 days a week and find it is very effective at getting the mucus up and out, and I do nebulize and use my Aerobika with the autogenic drainage ape to keep me on track —not sure I’m doing the actual breathing correctly, but it does have its effect.

Another thing I worried a lot about in the beginning was recognizing exacerbations and knowing when to ask for help. Fortunately, I’ve never had a really serious one. I do have a standing order for a sputum sample, just in case, but anytime I start going that direction, my immune system seems to knock it back down. I have not had a cold since before the covid lockdown. The only time I probably should have had treatment was with a sinus infection that lasted more than a couple weeks.

I have taken NAC 600 mg morning and night since just before the MAC diagnosis, suggested by pulmonologist. I also take guaifenesin when it seems appropriate. I have had an albuterol inhaler, but tended not to use it until recently. Now I do find it helpful if I take a couple puffs before my walk.

In January Dr. Winthrop advised that I start treatment. Though my CT scans were pretty stable there has been a decline over the 3 years and his opinion is that I’ll need to be treated sooner or later, and best to do it now before it does more damage. So I started taking Azithromycin and Ethambutol 5 months ago. My cough was much better by the end of the first week and I have had no side effects. It’s lovely not to be doing that hard coughing! I recently submitted my first sputum sample since treatment started, but this whole time I’ve had more negative results than positive.

As you can tell, I am one of the most casual people on this list. I work at the local food pantry one day a week, exposing myself to who knows what all, but seeing the people and contributing in my community keeps my spirits up. I try to live a reasonably healthy life-style, and not worry too much about the endless list of dos and don’ts. As my primary care doc said, “We don’t get out of this life without some aches and pains.” I’ll be 80 this month and plan to enjoy whatever time is still ahead of me.
All best, and sorry this is so long!
Anna