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Hi all,

Thanks for the feedback. I really appreciate the information.

So, an update... I decided to call the sleep center and see if they had any suggestions given the AHI that I was seeing. They wanted nothing to do with me and suggested that I call the DME folks. After leaving a message for the therapist there, she called back and we discussed my findings. She suggested that I press on and in a few weeks she would grab the card and present my data to the doctor. I asked about the EPR and she indicated that it was set at 3 just out of concern for comfort. I shared my (our) concern that it may be allowing events to occur and she indicated that it could be turned off when she came after the few weeks. I asked, hypothetically of course, if there would be any horrifying repercussions if this were to adjust itself before she came and she said that it would be fine to turn it off.

The other thing that I did last night, not really related to this but worth a laugh, was to make a horrible error while shaving. This was one of those errors that couldn't be hidden, so the only acceptable option was to shave it clean and allow it to start over. No big deal, I wasn't married to it anyway.

So, with no facial hair, and no EPR, I had a night of sleep with an AHI of 7.6. My leak was seemed to be under control with a 95th Percentile of 4.6 and a median of 0.0 (the 0.0 confused me a little). I couldn't see any correlation between the times of higher leak and the events. The events seemed to be pretty well spread out throughout the night.

I do feel somewhat better today which is a good thing. Hopefully it keeps getting better.

Sorry to hear about the DME/doc stuff, but cool to see you're starting to get results.

As for the leak/AHI connection:

I often have a leak rate of 0.0, but my AHI wavers between 1.5 and 3.5 regularly. Leaks don't always cause events, they just reduce the overall effectiveness of therapy. A leak (at least a larger one) reduces the overall pressure at the mask, meaning that you're not getting your prescribed pressure level, and that could allow events to get going. Even with the "sweet spot" of pressure for me and no visible leaks, I get events. That's normal. Sometimes you get events right when the leaks happen, other times they seem - and could indeed be - unrelated. Limiting leaks allows you to rule it out as a contributing factor to AHI numbers.

I do agree with the DME that you should give it a couple of weeks. This allows your body to get used to having your airway splinted open, and eases residual "habitual" events once your body realizes that, wow, you CAN breathe =) After that 1-2 week break-in period you should see AHI numbers slowly lower over time. It took me about 4 weeks to get to the point where I was ready to fiddle with my pressure to go from AHI numbers of 4-6 down to 1-3.

I do NOT agree that your sleep doc should want nothing to do with you, and your sleep center should have referred you back to your doctor, NOT your DME. Your DME is just an equipment provider, and although they have respiratory therapists on-staff, your doc should be taking an active role in this. If your doctor refuses to talk to you except for your annual check-up, then I urge you to try to find another doctor in your insurance coverage group. You need them on your team, and they have to be active members of that team.

minelson33 wrote:So, with no facial hair, and no EPR, I had a night of sleep with an AHI of 7.6. My leak was seemed to be under control with a 95th Percentile of 4.6 and a median of 0.0 (the 0.0 confused me a little). I couldn't see any correlation between the times of higher leak and the events. The events seemed to be pretty well spread out throughout the night.

Median leak number can be 0 if the overall leak was near the 0 mark. Especially with the 95 % leak being only 4.6. I bet if we looked at the leak line it would be pretty much at zero except for small blip or blips of leaks just slightly above that 4.6.

With EPR off your AHI has improved but still is not where it needs to be. Of course this is just one night. Give it some time (week or 2) to see if it comes down on its on. If not, this is something to talk to your doctor about or just take care of yourself depending on your own comfort level with adjusting pressures yourself. AHI goal is less than 5.

You're off to a good start [better than many folks], be patient and let your body get acclimated to the machine. Your numbers aren't bad and will certainly improve over time.

Looks like there's already lots of good advice here. I just wanted to chime in on the EPR item: I got a new S9 Elite last week. When I picked it up the therapist had set the EPR to 3 as that was the "highest level of comfort". Comfort is in the feeling of the beholder to paraphrase. Anyway, this was a replacement machine, my previous one not having any exhalation relief on it so I was sued to steady pressure all the time. The first night with EPR at 3 it took longer to fall asleep and I had several events right at sleep onset that kept waking me up. After changing the EPR to 1 I was able to fall asleep quite easily had had a pretty restful night even with a new machine and mask to adjust to. All that to say, set the EPR to whatever make YOU comfortable. Never mind what the therapist thinks is most comfortable.

Just for kicks I asked the therapist during the discussion about EPR whether it was something that I could change if I wanted to. She said no. Since I had already done my homework here and eleswhere, I had trouble not laughing in her face. It sounds like you have a fairly supportive RT so that will be helpful. Keep at it and let us know how we can help.

Hi all,

Just thought I would put out a progress report...

Last 3 nights AHI = 7.6, 8.9, and 5.5

Last 3 nights Leak = Median was 0 all three nights, 95th Perc. was 4.6, 4.6 and 0 (Not sure what was different last night to get a 0)

Will press on and see how things go...

Thanks,
Mike