How do I help my Father with CPAP

[ozij]

However, with the excessive leaks still happening I'm not sure that tinkering with settings makes sense yet.

I don't think these things are mutually exclusive. But it's your decision how to continue.

Wishing you much success!

[georgiegirl12]

I am very new to cpap and just completed my compliance review with the Luna G3. Reading about your father's problems leads me to wonder if his machine is enabled with auto-on and auto-off. If so, this may cause the machine to stop and restart keeping your father awake. My machine has those 2 fields turned to OFF. I have to physically turn the cpap on and off when I need to take off the mask. I also agree that your father would benefit greatly from an in-lab sleep study with a like-kind cpap machine while the Technician titrates the air pressure until his different issues are much better controlled or resolved. Then the cpap machine will be set for him to ramp up to the desired pressure. Side note- My humidifier is also set to AUTO. You are a great son. Your father is lucky to have you. Don't give up!

[TCLynx]

Reading about your father's problems leads me to wonder if his machine is enabled with auto-on and auto-off. If so, this may cause the machine to stop and restart keeping your father awake. My machine has those 2 fields turned to OFF. I have to physically turn the cpap on and off when I need to take off the mask.

I was reading about those settings, I currently have it set so that it will turn on Automatically when he starts breathing in the mask but I was worried that a large leak might make the machine think it had been turned off so I disabled the auto off feature so that you have to hit the button when you take it off.

I also agree that your father would benefit greatly from an in-lab sleep study with a like-kind cpap machine while the Technician titrates the air pressure until his different issues are much better controlled or resolved. Then the cpap machine will be set for him to ramp up to the desired pressure.

He had an in lab titration sleep study but it was only on cpap/bilevel methodologies. So he does have a perscription at the level they thought he did best at. Unfortunately, it looks like on that study with those pressures from 5 to 10 where he got to rem sleep for 6 minutes and he didn't have any centrals during that stretch, it looks like there were still plenty of Obstructive events. Then they started try higher and bi level pressures which he didn't do so well on.
While he is on his side, he doesn't have many OA events but that isn't very useful with a Cpap machine since it doesn't do anything for the centrals and as far as I can tell the lower pressures are not really working on the Obstructive events.

Basically the Dr thinks they have to go with the cpap first (just in case it works and they don't need to bother with the rest of it) before they will schedule a test check his heart to make sure he is safe for an ASV titration study. I couldn't really get an answer out of him about how long we need to be going on with the cpap before it is decided if it is or isn't working. Basically we have to get the leaks under control and then get probably a week of data without much large leaks before he will consider anything.

Here is a look at last night, zoomed in on the early part of the night after he went to sleep on his side. He normally falls to sleep really fast so probably only a few of those centrals are still awake.


Here is a longer stretch without large leaks where he was on his back.


He really didn't sleep that well last night, was up several times but he was able to put his socks and shoes on this morning on his own as well as use the toilet independently so at least better than a couple of the days last week.
At this point we are definitely not seeing any overall improvement on the baseline we can achieve simply with positional therapy.

[georgiegirl12]

I love the data you have. I need to see if my machine can do the same.
My machine is an APAP. They never tried me on a regular CPAP or bi-level. I took to the APAP like a duck to water. I go many days without a central event and then have only one during the night. The other events are generally less than one per hour. My doctor is very pleased with my results.
I have a mask with the hose going out of the top of my head. I love it. A hose holder keeps it out of my way. I sleep on my left side and flip to my right sometime during the night. I can't imagine dealing with the hose in front of me.
If I were in your father's shoes, I would be fed up. I would tell the DME provider and sleep lab/physician that I can't continue with the CPAP and request the APAP. They do not want us to give up and quit. I would want it replaced asap. There is no need to keep going with this set-up. It isn't working. Best of luck!

[TCLynx]

I love the data you have. I need to see if my machine can do the same.

To get those graphs I just had to put an SD card into the machine to collect the data then I can use a software called OSCAR on my computer to read the data. It won't get you any data for time before putting the SD card in though.
Look up OSCAR here and you should find more info.

If I were in your father's shoes, I would be fed up. I would tell the DME provider and sleep lab/physician that I can't continue with the CPAP and request the APAP. They do not want us to give up and quit. I would want it replaced asap. There is no need to keep going with this set-up. It isn't working. Best of luck!

He has only had the machine for almost 2 weeks, Last week when I sent a message to the Dr, he was like there isn't enough data yet without large leaks so until we get the mask staying sealed better, he wasn't interested in going over the data much.

We do have the hose holder and his current mask has a swivel on it. Right now the hose is really the least of his issues.

[Pugsy]

I love the data you have. I need to see if my machine can do the same.
My machine is an APAP.

Please re do your equipment profile so the links are in text format and not the icony/images.
I tried the link for your machine and it is broken. We have no idea what brand or model machine you are using.
We have no idea if it does data that is OSCAR compatible or not.

[georgiegirl12]

My sleep center tech told me that I should adjust the mask for tightness to troubleshoot. I had trouble with leaks when the mask was too tight and too loose. I was also told to pull the mouth/nose piece away from my face with 2 hands and then adjust it again until the suction seals it. The whole thing is trial and error.
I woke up one morning and couldn't hear anything from the mask. I wondered if it had turned off. I pulled the mask away and the tornado winds came out! Once it is right, it is perfect.

[TCLynx]

So dad was trying to communicate to me what is going on with the machine for him.

He seems to think that he is not falling to sleep at all. Last night.

He regularly says he thinks he is the one making the machine work. Like he is having to suck the air in and blow the air out, that the machine isn't blowing air.

When I test the mask or adjust the pressure higher though he doesn't like his cheeks inflating. (He notices it at a pressure of 7 or above.)

He keeps asking if he is supposed to be breathing through his mouth or his nose (I keep telling him either but it is always better to breath through your nose when you can.)

So we were trying things with the machine to see if we could find settings that are more comfortable for him. I did try setting the pressure range to 7 to 10 with EPR on for a while then we switched to 7 to 10 with EPR off to see if he could tell the difference. Not sure if he could.

I let him take a nap for a while but when I checked the SD card, it doesn't seem to have recorded the nap time.

I might set the EPR to off or ramp only (but since his starting pressure is so low the EPR doesn't do anything during ramp anyway so I guess it should just be off.) for tonight.

[georgiegirl12]

Maybe turn his ramp time down to one of the lowest settings. Maybe 10 minutes? I would tell him the machine is working even if he can't feel it or hear it. My concern would be if he isn't getting enough air to breathe normally. I tried a nasal pillow mask fitting and found I felt starved for air. I returned to the regular nasal mask fitting and had plenty of air.

My machine is the Luna G3 APAP but I could only find the CPAP in the list of links. It doesn't have Oscar but I believe there is clinical data, compliance data graphs but I haven't researched how to get to it yet.

I think I resolved the equipment descriptions to text on my profile.

[Pugsy]

I have read where people have lots of trouble with data distortion when using the auto-on/auto off.

Where did you read that piece of garbage? It's totally not true. Please don't go spreading that BS.

[georgiegirl12]

I apologize. I would never intentionally spread misinformation. I will clean up the post.

[TCLynx]

I have Dad's machine set to turn on when he starts breathing in the mask but last night one time it didn't seem to turn on quickly on it's own so I hit the power button to get it going. I don't have the auto off enabled since he has been having so many really large leaks I didn't want it to turn off when he hasn't actually taken the mask off.

So We are in Central Florida and while not really in the path of Debbie, we are still getting a lot of rain and some wind. Dad actually lives in a trailer right next to our "apartment in the Barn" on our farm. Since I didn't want to be running across the yard in the rain all night, we brought dad in to sleep on the couch. He slept most of the night on his left side. That I know of the power went out a couple times and generator kicked in but both times that happened while he was up using the toilet.
I suppose it is possible that the power could have glitched before that but well what I am saying is there are long stretches of time where the data says the machine wasn't on when I'm fairly certain it was on. (The power had not glitched even enough to unset my clock which usually goes down with anything more than the slightest flicker.)

Anyway, other than the Glitched out time periods here is the Data from Last night. What the machine caught seems to have been much better than anything else so far. He might have to sleep on that couch all the time (it is a very comfortable couch and it is probably at least as old as dad is, it came from his parent's house and was passed to my parents and then I took it to college, I think my room mate slept on that couch more than her own bed. It has been re-upholstered twice.)
Here are images.
Overall whole night


Settings


Likely glitched out time period. I'm pretty sure it was on and leaking terribly that whole time.


And a close up showing what looks like a different glitch where the flags are offset a little from the actual breathing events.

[Pugsy]

Sometimes when the leaks are really large the machine simply can't sense correctly and may end up showing no breathing because it simply didn't know that breathing was going on.
It just doesn't detect any breathing. That may be what happened with those big gaps in data. I thought that maybe we might see a BND (breathing not detected) flag but maybe not.
I don't know for sure that is what happened but maybe......

[TCLynx]

Sometimes when the leaks are really large the machine simply can't sense correctly and may end up showing no breathing because it simply didn't know that breathing was going on.
It just doesn't detect any breathing. That may be what happened with those big gaps in data. I thought that maybe we might see a BND (breathing not detected) flag but maybe not.
I don't know for sure that is what happened but maybe......

Really hard to say what happened. It seems like some sort of computer glitch (I suppose there could have been power hiccups not big enough to upset the clocks or air filters but still big enough to upset the AirSense?)

In any case, he did sleep better during the hours that the machine was recording that he is doing better today than he has in the previous two weeks on the machine.

[TCLynx]

Back in his own bed last night and back to the Leaking most of the night.
Ugh and I can't upload images right now.