How do I help my Father with CPAP

Pugsy wrote: ↑

Mon Jul 29, 2024 5:02 pm

TCLynx wrote: ↑

Mon Jul 29, 2024 4:53 pm

Ok Why is the time on Oscar showing an hour off from what it should? I believe the time is set correctly on the Airsense 11. Is this a DST thing?

It's a DST thing and this fall it will likely self correct.

With the AirSense 11 machines the only thing that you could maybe change is the time setting for Time Zones.
And the access that feature all past usage has to be erased first.
But we don't want to erase past usage data do we?

Well OOPS, I did go in and change the time zone. It did not give me any warning about doing it though. And I have actually saved all the SD card data to the computer so at least the past data is backed up in case it did go erase things.

TCLynx wrote: ↑

Mon Jul 29, 2024 6:49 pm

Well OOPS, I did go in and change the time zone. It did not give me any warning about doing it though. And I have actually saved all the SD card data to the computer so at least the past data is backed up in case it did go erase things.

It shouldn't have erased anything since it allowed a time zone change.
My understanding is that when it won't allow a time zone change then you simply can't change it. The option is grayed out on the menu.
So I don't think it erased anything. Changing the time zone itself doesn't also erase the past data.

People who come here wanting to change the time zone tell us that the option to change it isn't available.
And the manual mentions that the time zone changing isn't available unless past data isn't on the machine.

Count your blessings.

This is just the AirSense/AirCurve 11 models.

Pugsy wrote: ↑

Mon Jul 29, 2024 7:04 pm

This is just the AirSense/AirCurve 11 models.

We have a ResMed AirSense 11 Not an AirCurve.

Then again, maybe the fact that it did not have an SD card installed when it was set up perhaps meant that the ability to change the time zone setting wasn't locked?

TCLynx wrote: ↑

Mon Jul 29, 2024 7:23 pm

Then again, maybe the fact that it did not have an SD card installed when it was set up perhaps meant that the ability to change the time zone setting wasn't locked?

SD card had nothing to do with it.....in or out of the machine the time zone thing is totally separate.

I mention AirSense/AirCurve 11 with both because ResMed just released the AirCurve 11 models and someone who has one of them may read this and realize that the time zone thing pertains to them as well.
I am well aware of the fact that your dad's machine is the AirSense 11 AutoSet.

So do the Doctors viewing the Clinical version of the data from the ResMed Airsense machines actually have access to the graphs? Or are they basically just looking at a paid version of the MyAir app that really just gives the averages per hour for the night?

The Sleep Doctor's response to the message I sent was basically the leaks are too high so there are too many UAs to really know what's going on but "Of note, the central apneic index actually appears pretty low" Call the DME supplier and get a mask fitting was all he said to do. Well that is already scheduled.

Does anyone have any Ideas how to alert myself or the night time Aide when they are here that the leak rate on the mask is too high? The ResMed Airsense machines apparently don't have any sort of alarm feature that I could set alexa up to hear and the app doesn't read anything till after the session is complete. What am I supposed to do with a LEAK ADJUST MASK warning AFTER it has been removed???

I know dealing with CPAP is challenging even for the relatively cognitively intact (as intact as you can be with sleep deprivation.) Trying to support some one else who is suffering from Lewy Body Dementia is really tricky. He keeps asking where he is supposed to blow into it. It is really hard to hear/understand him in the first place but as soon as you put the mask on him, he starts talking and you have to take it back off and get him to repeat to know what he said.

Here is hoping that the mask they bring Thursday will be the answer.

I have been on PAP therapy since 2010. Thankfully Pugsy was here back then to help me get started, along with many others.

The only full face mask I have found, that doesn't wind up in my mouth is the F&P 431. I only have a couple dozen different masks in my collection. Of course I am a youngster only 78 (for the next 3 weeks).

In 2013 I was scheduled for a titration study because of centrals. When I called to confirm the appointment I discovered the lab I was assigned to did not have the equipment to titrate for ASV/Centrals. So we corrected that and after the successful titration I got my first ASV machine.

I have learned that you MUST know exactly what you want before you talk to a doc or DME. You MUST be vocal and persistent and NEVER take no for an answer.
I have always received much better more useful information here, than through proper medical channels, even though there are few MDs and DMEs here and they have been pretty quiet lately.

bwexler wrote: ↑

Wed Jul 31, 2024 12:45 pm

The only full face mask I have found, that doesn't wind up in my mouth is the F&P 431. I only have a couple dozen different masks in my collection. Of course I am a youngster only 78 (for the next 3 weeks).

In 2013 I was scheduled for a titration study because of centrals. When I called to confirm the appointment I discovered the lab I was assigned to did not have the equipment to titrate for ASV/Centrals. So we corrected that and after the successful titration I got my first ASV machine.

I have learned that you MUST know exactly what you want before you talk to a doc or DME. You MUST be vocal and persistent and NEVER take no for an answer.
I have always received much better more useful information here, than through proper medical channels, even though there are few MDs and DMEs here and they have been pretty quiet lately.

I did ask them about the F&P 431. They said it was an OLD style that they didn't really have on hand, that if we wanted it we would have to have it shipped to us and that they didn't have the fit packs so they didn't know how we would go about getting the correct size fitted. If whatever they bring today for the fitting appointment doesn't do the job, I'm going to insist on the F&P 431.

Yea, I hear you about how you have to be your own medical advocate and definitely be squeaky about it since it seems the medical establishment and insurance and all the layers along with the insurance seem to just want to take money and not actually provide much of anything. Like the appointment just to schedule another appointment after which you need another appointment to discuss the results before they can schedule the next appointment to discuss treatment after which you need another appointment to schedule the actual treatment which the insurance will only cover 6 appointments, 2 of which are just evaluations and not actually treatment sort of thing. (That example was actually about Physical Therapy.)

But the whole thing of we are only going to titrate for Cpap and BiLevel because we have to check his heart before we do a ASV test. WELL after the initial test we knew he had lots of centrals and they considered his OA kinda mild. So the doctors are trying to make it sound like no we have to do this lower level test and just use a CPAP because that is all the insurance is willing to do at first and if it doesn't work we can test the more expensive one. Ok, so the machine costs more but it seems to me that just doing ONE Lab Sleep Study even if it is a bit more expensive to titrate for all three modes would be more cost effective rather than doing the first study and then covering part of the cost of the Cpap machine for however long and then having to go back for another sleep study and then getting the more expensive machine anyway. The single sleep study and then trying the cpap first but then having the data to upgrade to the ASV IF the CPAP doesn't do the job would seem more cost and time effective to me (watching Dad deteriorate these past two years while waiting for referral appointments has been really painful for me and I'm certain it has been horrible for him.)

I love bulletin boards/forums for learning things and getting help/support. I've been really disappointed in some groups that have dropped their old Forums in favor of just having people go to facebook. Facebook posts don't let you keep a thread together and in order and it is much harder and more distracting to find things there.)

So when the Tech came out today they said no they don't have the chin strap.

They did set dad up with a F&P Vitera full-face CPAP mask with the large seal. We will see how it goes tonight. He said he would put in the request for them to ship us the F&P 431 with the large cushion/seal.

Dad REALLY needs a good night's sleep, he is having a really rough day today, very confused about everything.

That was the first night on the new mask. So not that great on the leak front. Let me know if anyone wants to see anything zoomed in.
He was really good about wearing it for a long time last night and he is certainly doing better today than he had been the two days before.
Yesterday he couldn't put his socks on, or more accurately he kept trying to put both of them on one foot. He wasn't able to do much of his exercise routines, he has Parkinson's and has worked very hard to keep up with the physical therapy since exercise is the single most effective treatment for slowing that condition's progression.

I so need to have him on some form of sleep therapy that works because if he is getting decent sleep, he doesn't really exhibit as much dementia. I would almost venture to say that when he is getting good sleep he recovers to the point of moderate cognitive decline but not necessarily Dementia anymore (except maybe in the evening as he gets tired he may exhibit signs of confusion.)

On Days he hasn't had good sleep, he can't use the toilet independently, he needs help dressing, he has trouble getting his food and he is far more likely to have a fall or get lost in the house.
I so don't want to have to wait months to get the Dr to schedule the next sleep study for the ASV if it is indeed needed.

The fact that during the stretches of time when there are no leaks, he is still having lots of events, last night there was a stretch of obstructive events and the machine doesn't seem to be correcting them and the cpap doesn't do anything about CA events anyway.

So I think tonight I have to help him shave because maybe the facial hair was causing problems with the seal and I will encourage side sleeping for tonight since last night he slept on his back all night.

TCLynx wrote: ↑

Fri Aug 02, 2024 7:52 am

The fact that during the stretches of time when there are no leaks, he is still having lots of events

I wonder where you see those streches of time with no leak and lots of events. Just give us the time period. I see only one, 03:00 to 03:20, and that could be the result of sleep onset breathing distrubances. It's possible that the machine is reporting osbtructive apneas when he hasn't even fallen asleep.

TCLynx wrote: ↑

Fri Aug 02, 2024 7:52 am

So not that great on the leak front.

That's an understatement. 46.5% of the night in large leak territory makes for very little therapy.

As for the machine responding or not - that can be seen in Pressure chart, not in the Mask Pressure chart.

Can you film your father when he sleeps, to get a sense of what causes those leaks?
Sometimes a hose hanger helps, sometimes a different head pillow.

Here is zoomed in on the first hour of sleep when the mask hadn't started leaking much yet.


I have a camera set up but I don't think it has an angle to get a good close up on his face and it isn't recording audio. Even if it was, I don't know if it could pick up the sound of the air.

Here is that hour around 3am


Now perhaps the first couple events after laying down are awake and not real. Now since I'm not in the room with him I can't be sure but I have known him to fall to sleep almost immediately upon laying down so I definitely don't expect that he is actually awake for more than 5 to 15 minutes after hitting the pillow.

As to the leak rate. Last night was considerably better than most other nights.

I was thinking of searching the video recording around the time when the leaks started, according to OSCAR. I assume the camera records time just like the CPAP does.
The leaks are bad. It would help if you could figure out what made them better than the night before. They do need improvement.

EPR, a drop in exhale pressure, is set at three. The machine can't supply an exhalre pressure lower than 4, so EPR only kicks in when the pressure is .
Look at the stable breathing between 20:30 and 21:05. No EPAP. The majority of those "big breath, diminsing breaths, pause" and repeat cycle happen with EPR on. I'd try to get rid of the EPR. Can's say whether all at once or gradually, that's something you'll have to play by ear.

For some people, EPR makes CO2 clearance easier. But its the CO2 which crated the drive to inhale - and its clearance can destabilize breathing.

I would also forgo the low minimun / ramp. What we see is a relatively stable period when the pressure is about 6-7, before EPR kicks in. And a cyclic mess when EPR is active.

I am far from an expert, but I agree with ojig. I would turn off epr.
I would also adjust minimum to 6 or 7 and bump maximum to 11 or 12.
That is where I started my wife last Christmas and I don't remember her having a night over 2 AHI and usually below 1 AHI.

As far as mask leaks I have been fighting them myself for years, so others will have to chime in to help with that. In spite of my leaks I am often under 1 AHI.

ozij wrote: ↑

Fri Aug 02, 2024 2:31 pm

I was thinking of searching the video recording around the time when the leaks started, according to OSCAR. I assume the camera records time just like the CPAP does.
The leaks are bad. It would help if you could figure out what made them better than the night before. They do need improvement.

EPR, a drop in exhale pressure, is set at three. The machine can't supply an exhalre pressure lower than 4, so EPR only kicks in when the pressure is .
Look at the stable breathing between 20:30 and 21:05. No EPAP. The majority of those "big breath, diminsing breaths, pause" and repeat cycle happen with EPR on. I'd try to get rid of the EPR. Can's say whether all at once or gradually, that's something you'll have to play by ear.

For some people, EPR makes CO2 clearance easier. But its the CO2 which crated the drive to inhale - and its clearance can destabilize breathing.

I would also forgo the low minimun / ramp. What we see is a relatively stable period when the pressure is about 6-7, before EPR kicks in. And a cyclic mess when EPR is active.

Well the main difference in the leaks from the night before was a different mask.

Unfortunately the camera doesn't give super detailed video in the dark at the angle dad's face is when he is laying down. Camera was installed mainly to alert me when he gets up at night. He is in a trailer so I'm not too comfortable with trying to mount the camera on the ceiling over his head. (as in the walls/ceiling are little better than press board, I don't trust mounting with tape normally and I don't think fasteners are much better in the trailer. And then there would be the issue of getting power to it in the middle of the ceiling.) About the leaks, I do think it is primarily a jaw drop problem.

Ok that makes sense about the EPR, I think they turn it on normally as a comfort thing for new users but at his prescribed pressure it can't even kick in more than half the range.

However, I don't know that I can link the "The majority of those "big breath, diminsing breaths, pause" and repeat cycle happen with EPR on" because some of the other nights, that pattern was happening with the minimum pressure. Of course the large leaks might be like having EPR on so until I can figure out how to get the leaks under control I'm not sure anything is gonna help.

They did order a F&P 431 for him so hopefully it gets here soon and maybe it will help the Jaw drop problem.

However, with the excessive leaks still happening I'm not sure that tinkering with settings makes sense yet. I did adjust humidity after the first night or so when he complained of dry mouth and I did turn ramp off after he kept complaining about he had to blow and suck to get air with the machine, as in I don't think he was really feeling the air at the start up pressure of 4.

The Dr seemed to think Dad actually did best with a pressure around 6 during the study.

Oh, and the SD card didn't record last night's sessions!!!!

Pugsy wrote: ↑

Mon Jul 29, 2024 8:01 pm

TCLynx wrote: ↑

Mon Jul 29, 2024 7:23 pm

Then again, maybe the fact that it did not have an SD card installed when it was set up perhaps meant that the ability to change the time zone setting wasn't locked?

SD card had nothing to do with it.....in or out of the machine the time zone thing is totally separate.

I mention AirSense/AirCurve 11 with both because ResMed just released the AirCurve 11 models and someone who has one of them may read this and realize that the time zone thing pertains to them as well.
I am well aware of the fact that your dad's machine is the AirSense 11 AutoSet.

So on the topic of the time zone. It seamed like it let me change it the other day. But when I imported the next set from the SD card the next day, it had not actually changed the time zone (or it got put back) So when I went in to look and try again, it gave me the message you are not able to change the time zone with data already present. or something like that. I believe I did have the SD card in when I tried it that second time.
So that's annoying. Oh well.