Mac and bronchiectasis and cpap.

I’m so glad you’re asking! I was diagnosed with sleep apnea at the same time as MAC in 2015. I suspect not too many people have both since most people with sleep apnea are overweight and most with MAC are underweight. But none of my doctors, including at NJH, have been interested in talking to me about my cpap.
I would love some solid information on cleaning and disinfecting the equipment, and on the effect of exacerbations on the effectiveness of the cpap.
What are your questions/issues?
Martha

Actually I guess I started the cpap in 2019 about the same time I started treatment for MAC.
Martha

@sounder, fellow MAC member @pjas972j started this related discussion that you might find helpful:
- What is your CPAP Cleaning Routine?: https://connect.mayoclinic.org/discussion/cpap-cleaning-routine/

I was on CPAP 20 years ago and had to stop due to nasal issues. Restarted 5/7/26,July 31st diagnosed the Pneumonia. I have ABPA and bronchiectasis. I don't know if I should continue. I cleaned it religiously, used distilled water . I felt so much better when I started, them last 2 weeks started coughing mucus plugs. I need answers.

@melzim
Are you employing airway clearance to help clear phlegm? Twice a day for most is mainstay of treatment.

@melzim Hmmm, I think the aspergillosis (ABPA) didn't crop up overnight - maybe the moisturized air from the CPAP liquified the "crud" in your lungs so you can now cough it out?
How are your treating the infection? Are you doing airway clearance?

Hi.
Zithromax and Vantin for 3 more days. Usually I have dry bronchiectasis. But I think the Cpap opened up my lungs. I was scared to do CPAP again. But I religiously clean it daily and deep wash on weekends. I started my Vest again. Usually doesn't due much. They gave me a new flutter valve I like. The cycle of every couple years of going thru this is getting old.

@melzim Hi, I appreciate this question! I have been followed at the NYU bronchiectasis & NTM center for 2+ years now for longstanding bronchiectasis, and MAC that showed up 2 years ago. It was my PCP who suggested testing for sleep apnea since my deep fatigue was not resolving. He was right. They are finding a lot more apnea than they had expected among women and those of us who are not carrying extra weight -- they just didn't suspect it in the past. The sleep specialist also told me that with chronic lung or heart issues they want to treat apnea aggressively since (of course) dips in oxygen put extra stress on our lungs, and sleep apnea IS more common among those with bronchiectasis than in the general population.
I have now been on cpap for 8 months. I felt better immediately but then had RSV that went to pneumonia this past spring. To get to the point: I felt that cpap helped me through the pneumonia: I could breath overnight and reduced the coughing that could interrupt much-needed rest.
I feel better now than I have in a long time and recent PFT was dramatically improved.
It makes a lot of sense that these conditions can be connected or overlap.

@marthamac I caution against thinking of sleep apnea as something that mainly effects overweight people. That may be true for certain demographics, i.e. younger men, but women in menopause (many of us) are at increased risk for sleep apnea, and those in my immediate circle recently diagnosed with sleep apnea were all normal to underweight.

@melzim F/u I started Cpap again, and got best nights sleep since leaving hospital. F/u with pulmonologist end of month. Fingers crossed.