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 | Mar 1 3:34pm

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

narelled23 | @narelled23 | Mar 2 6:49pm

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.

ingrid1947 | @ingrid1947 | Jul 12 9:41am

I see this is an old post. I am new to this group. I have Bronchiectasis, NTM and use a CPAP which helps keep my sinuses clear and I don't wake up coughing from congestion. I am interested in how to keep a CPAP clean. I change my nosepiece every two weeks and wash the nosepiece, hose and headgear daily with very hot water and dish soap. I rinse the humidity chamber daily with boiled distilled water and have recently started soaking it weekly in hydrogen peroxide
since I found out vinegar doesn't kill NTM. I don't use anything in the chamber except boiled distilled water. Is this enough? I was diagnosed with Bronchiectasis and NTM in 2008, have been treated for NTM. My Drs are of the persuasion to live your life with only basic suggestions on how to avoid NTM. I see on this group others are more diligent. I have become more anxious since having Absessus colonize. Thanks for any suggestions.

Sue, Volunteer Mentor | @sueinmn | Jul 12 10:56am

In reply to @ingrid1947 "I see this is an old post. I am new to this group. I have Bronchiectasis,..." + (show)

@ingrid1947 My pulmonologist worked with the sleep clinic to determine that my sleep apnea could be treated with a dental appliance because she is concerned about the ability to keep a CPAP system adequately sanitized. It has worked well for me, and the upside is the portability and how unconfining it is.

ingrid1947 | @ingrid1947 | Jul 12 11:33am

How comfortable is your dental appliance? Did your regular dentist do it,? I had read that such appliances put your jaws into an unnatural position and I worried about that causing problems. My apnea is to severe but the warm air keeps my sinuses clear at night.

Sue, Volunteer Mentor | @sueinmn | Jul 12 11:24pm

In reply to @ingrid1947 "How comfortable is your dental appliance? Did your regular dentist do it,? I had read that..." + (show)

@ingrid1947 It wasn't very comfortable the first few weeks, but it is adjustable, and I added extension for the lower jaw every week or so until the snoring stopped. I also did the exercises daily to loosen my jaw. Now, a year later, I find it comfortable enough - far better than a mask and all that stuff. Cleaning is easy too - daily soaks w/ 1/4 denture tablet, weekly soak in 3% peroxide.

ingrid1947 | @ingrid1947 | Jul 13 9:05am

In reply to @sueinmn "@ingrid1947 It wasn't very comfortable the first few weeks, but it is adjustable, and I added..." + (show)

@sueinmn thanks for letting me know about your experience! Did you try any of the cheaper versions to see if you could put up with it?

Sue, Volunteer Mentor | @sueinmn | Jul 13 9:47am

In reply to @ingrid1947 "@sueinmn thanks for letting me know about your experience! Did you try any of the cheaper..." + (show)

@ingrid1947 No, mine was mostly covered by Medicare Part B, my pulmonologist was familiar with it, so went with the recommended PantherX device.
Many of the OTC devices are not rigid so they can be fitted to many mouths. I don't know how they would be effective.

ingrid1947 | @ingrid1947 | Jul 13 1:08pm

In reply to @sueinmn "@ingrid1947 No, mine was mostly covered by Medicare Part B, my pulmonologist was familiar with it,..." + (show)

@sueinmn
I just wondered about trying the OTC first to see if I could tolerate having something in my mouth overnight vs the expense and effort of the pro version and then not being able to stand it. But maybe wouldn't be a fair trial if not that similar.

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