Bronchiectasis, MAC and SLEEP APNEA

Posted by lvnl @lvnl, Feb 24 8:46am

Hello all, I know a lot of people with chronic lung conditions have sleep apnea and now I have been found to be one of them. I have seen that that is some of you too! Mine is mild but the sleep doctor (who works with my bronchiectasis/MAC team) recommends cpap for even mild cases when there are "comorbidities" (other conditions) that can be made worse by the apnea. Bronchiectasis is one of those conditions. I have now had my first several nights with a cpap machine.
Two questions:
1. Can anyone share experience with how treating the apnea has impacted your breathing in general, and/or your bronchiectasis? What has your journey been like? I'm really interested in what folks do about cleaning everything properly and whether you clean your bronchiectasis nebulizer parts together with the cpap machine parts and so on.
2. Does anyone have a clue about a good apnea group online? I see that Mayo only has a "sleep disorders" group which is sooooo broad. I haven't been able to find any active group that is specific to apnea even on the apnea info / organization websites (one of them has a history with literally a handful of posts over several months...). I may have unrealistic expectations based on how responsive and helpful this group is! Maybe there isn't any comparison! Anyway, I'm grateful for any info and insights.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

scoop | @scoop | Feb 24 12:56pm

Regarding #2, Facebook has a lot of support groups. Have you looked there?

lvnl | @lvnl | 4 days ago

Hi Scoop, thanks -- I'm not on Facebook. I've stayed off all these years. Maybe I have to start!

narelled23 | @narelled23 | 3 days ago

Sorry...I don't have experience with cpap machines but I do have severe sleep apnea and Bronchiectasis. I did go to a lot of trouble over a couple of years to avoid a cpap. What has worked for me is a MASS dental splint. My apneas were around 40+ per hour, the MASS brought it down to under 5 per hour on the recent study done. Very happy about that. They use 3D imaging to get the fit good and the one I have uses the fangs on the bottom which hinge onto stops on the upper part. Quite comfortable, cost a bit over AU$1,000.