How do I help my Father with CPAP

Any doctor can order an echocardiogram test. Doesn't have to be a cardiologist.
The ejection rate is what potential ASV users need to look at.

Thanks for your response. I do change masks on occasion. I'm on the Mirage Quattro now. It seems to be working best for me. For now. This is a terrible disease. God bless.

Sheriff

I'm still in a bit of a panic because the sleep Dr has not responded to any of my calls or messages through the portal. They did send a referral for Cardiology but didn't bother to message me about it and the portal doesn't actually notify about that so it is only because I went in looking that I found it. Unfortunately it doesn't say what test we are looking for.

Originally when I called the Cardiologist that the Primary care Dr sent us to, they said the earliest appointment was January 6th. Now I'm thinking OK, if we have another episode similar to what happened Monday, I'm hauling him to the ER.

We did get him on the cancellation list and the office did call back later saying they could get him in Mid November. Ok that is a little better, but I don't know how well he is going to be doing by then, if he isn't having heart problems now, I'm sure lack of O2 when he sleeps will have him failing in many ways in 4 months (seeing as the cardio appointment is a consultation to decide if anything needs to be done and then we will have to wait on scheduling of the test and then we have to wait for the results and an appointment to get the results and then get them to the sleep Dr and then wait for an appointment with them to decide if they are going to order the ASV titration study or not and then wait for an sleep study appointment and then after that, wait for the results and then have another appointment scheduled with the sleep Dr to see if they are going to order the ASV machine, and then wait on the DME appointment before maybe getting to the next step.

All this time watching him decline rather rapidly just because he hasn't been able to get proper sleep. I mean he was still working in December 2022 doing farm deliveries for me and helping with planting, transplanting, cleaning and filling trays at the farm. Now not only is he largely unable to help much, we need to supervise him most of the time.

Can anyone recommend an O2 monitor setup that I can have hook to wifi to alert me. The one I currently have only seems to connect via Bluetooth and I don't think it will reach me in my bedroom, My current alarms work with a floor mat but that only tells me when he gets out of bed, it doesn't tell me that he is yelling or having an issue with the cpap machine or if he is simply not breathing for 3 minutes and the machine is not doing anything about it.

Pugsy wrote: ↑

Tue Aug 27, 2024 6:44 pm

Any doctor can order an echocardiogram test. Doesn't have to be a cardiologist.
The ejection rate is what potential ASV users need to look at.

Oh, I didn't see this a moment ago when I started writing my post.

Thank You I think I'll go ask the Primary Care Dr if they can order the test!

The Nurse Practitioner, from the Sleep Dr office, who has been on dad's case called me back finally this morning. I think they are kinda at a loss about what to do for dad right now. In the titration study, he had actually done best at the beginning when the pressure was set at 4. So at this point, they are setting that as his pressure for tonight to see how he does. They said they would call be back tomorrow at lunch time.

Ok, so I asked both the Sleep Dr and the Primary Care Dr if either of them could order the echo, both refused because they don't "read" the echo so they can't order the test.

So went back and called the Cardiology office and asked if we could get in any sooner if we were to see a different provider (at first they sounded like they didn't want us to do that but I was like "we just need someone who can order and read a cardio echo") so they relented and say Hay, you can see so and so on Friday at 2pm. I really hope this means we can get in for the cardio echo the beginning of the week and have results to the Sleep Dr so Dad can get scheduled for a ASV titration sleep study. I don't know how long it will take to get that scheduled. (Tricky part with scheduling that is I have a 10 year old son and a husband who travels for work and I'm not really comfortable leaving my 10 year old home alone for 10-12 hours overnight while I take Dad for the study.)

Again, can anyone recommend a pulse ox that can alert me over wifi or cellular? The ones that only do blue tooth I don't think will stay connected from Dad's room all the way over to may room. I have a Wellue Checkme O2 Max but it connects via bluetooth and I don't think it remains connected if I bring the phone to my bedroom when Dad is in his room. I don't trust Alexa routines to work consistently, it already doesn't alert when the wet detective starts beeping and it is supposed to (it used to work.)

So I decided to create a SleepHQ account to see if it will be easier to share nights that way
https://sleephq.com/public/7a87d2a0-7f ... 4dd76963c7

Oh, and last night, I don't think the pressure setting had taken effect. When I looked at the data this morning, it was still showing 4-8 instead of just 4.
And talking to the Nurse Practitioner, She doesn't have access to flow reports.
And her data is telling her that he was on a pressure of 4 all night last night but looking at the data in Oscar it doesn't look that way to me.

I think perhaps, the machine needs to start and stop before the adjustments take effect because the last time she changed the settings, It didn't take effect until after he got up and then went back to bed that night.

So lesson learned, always go in and test the pressure after a change.

Here is the sleep HQ link from Sunday Night/Monday Morning. https://sleephq.com/public/478bcdb3-e26 ... 5bb5f3531b
Look at the time from 5:06 to 5:13 am That shows where he was sleeping and then stopped breathing a couple times and then another time for like 2 and a half minutes then the machine stopped recording for a time and then you see when he woke up yelling. He did NOT turn off the machine, where you see the large leak, that was him trying to pull the mask away from his face as he was yelling for help.

HELP I told the DME company about it, I told the Sleep Dr about it, I have taken Dad to a Cardiologist and told them about it. They act concerned but haven't really offered any immediate help other than they have tinkered with the settings. The Cardiologist ordered a heart monitor for two days but that won't happen for a couple weeks. They also Ordered an Echo but due to lack of techs, that earliest appointment is in November. At this point I think the only way to get him checked out sooner rather than later will be dragging him into the ER. He is still not doing very well.

Here is yesterday's Sleep HQ link
https://sleephq.com/public/5be44c85-554 ... 24e851f624

So why am I seeing things that look like he stops breathing for like 30 seconds at a time and it isn't flagging it as anything?
And why is it flagging so many OA when there is no flow limit or snoring?

TCLynx wrote: ↑

Sun Sep 01, 2024 5:33 am

Here is yesterday's Sleep HQ link
https://sleephq.com/public/5be44c85-554 ... 24e851f624

So why am I seeing things that look like he stops breathing for like 30 seconds at a time and it isn't flagging it as anything?
And why is it flagging so many OA when there is no flow limit or snoring?

There are snores in that chart.
4 is too low.

Oh I'm not saying that he never has obstructive apnea or snoring. I'm just noting that there are lots of times when it is flagging as obstructive and there is no flow limit or snoring near that flag.

I believe you are right that 4 is too low for the obstructive events. However, during his titration sleep study, that is the pressure he did best at. The centrals just got worse as they tried all the levels for cpap and bi-level.

I'm pretty sure he actually needs another titration study on an ASV device but apparently they don't even schedule the first study for that because they didn't even bother to say we needed to get him a heart echo before doing the first titration study.

So this past Friday I got him in to see a cardiologist since none of his other doctors were willing to order an echo because they don't read them so they won't order them. But apparently you can't even get an heart echo done quickly around here due to shortages of techs so that is scheduled for November! Holly crap I should have just rushed him to the Hospital Last Monday Morning.

TCLynx wrote: ↑

Sat Aug 31, 2024 5:44 am

Here is the sleep HQ link from Sunday Night/Monday Morning. https://sleephq.com/public/478bcdb3-e26 ... 5bb5f3531b
Look at the time from 5:06 to 5:13 am That shows where he was sleeping and then stopped breathing a couple times and then another time for like 2 and a half minutes then the machine stopped recording for a time and then you see when he woke up yelling. He did NOT turn off the machine, where you see the large leak, that was him trying to pull the mask away from his face as he was yelling for help.

And yet, the data shows the machine quit recording data for a while.

Which begs a couple of questions:

1) Is SmartStop enabled? What about SmartStart? If SmartStop is enabled, I'd disable it if I were you. As for SmartStart? If his initial pressure is 4cm, SmartStart is not reliable, so disable that as well.

2) Is this a so-called "patient disconnect" where the machine simply lost track of his breathing for one reason or another? When this kind of data showed up in my own data a time or two way, way back when, that's what the DME called it--a "patient disconnect" as if it were my fault the machine lost track of my breathing. So I'm not saying your dad did something here---rather I'm saying there's a chance the machine just lost track of his breathing. But since there is no leak present when this happened, the question would be why did the machine lose track of the breathing? In other words, is there a chance (even a remote one) that the machine ought to be replaced under warranty for not being able to track data when it should be able to track the data?

HELP I told the DME company about it, I told the Sleep Dr about it, I have taken Dad to a Cardiologist and told them about it. They act concerned but haven't really offered any immediate help other than they have tinkered with the settings.

If I were you and the DME is physically close enough, I'd take the machine and its SD card directly to the DME and tell them you want them to download the detailed data from the SD card and look at this night, particularly the stuff around 5:06-5:13. And describe exactly what happened in terms of your dad waking up yelling for help. Ask them if the machine could be swapped out under warranty since you are worried that it is not working correctly.

When this kind of thing happened to me two or three times way back when in 2011, I was able to get the DME to replace my first PR System One BiPAP Auto under warranty. But only after I had them look at the data for themselves in my presence.

TCLynx wrote: ↑

Mon Sep 02, 2024 6:54 am

Oh I'm not saying that he never has obstructive apnea or snoring. I'm just noting that there are lots of times when it is flagging as obstructive and there is no flow limit or snoring near that flag.

Some obstructive apneas happen without any prior warning signals that the upper airway is in danger of collapsing. I think they're sometimes called frank obstructive apneas.

I believe you are right that 4 is too low for the obstructive events. However, during his titration sleep study, that is the pressure he did best at. The centrals just got worse as they tried all the levels for cpap and bi-level.

Your father appears to be a complicated case. And it may very well be that a trade-off between using a pressure that is too low to prevent all the obstructive events, flow limitations, and snoring still winds up giving him better O2 saturation levels over the course of the night than a higher pressure that induces the centrals with their potential for O2 desats and longer periods of unstable breathing. Heck, it's even possible that some of those flow limitations scored at higher pressures are not flow limitations at all, but rather unstable breathing being caused by the higher pressures messing up with his CO2 level-trigger for the "inhale now" response from his brain.

So this past Friday I got him in to see a cardiologist since none of his other doctors were willing to order an echo because they don't read them so they won't order them. But apparently you can't even get an heart echo done quickly around here due to shortages of techs so that is scheduled for November! Holly crap I should have just rushed him to the Hospital Last Monday Morning.

In all seriousness, don't hesitate to take him to the ER the next time something like this happens. Sometimes that is what it takes to cut through the red tape that is our badly messed up medical system.

He is totally a complex case. The DME office is like 2 hours each way so I'm kinda limited for a time when I can leave here and take him there. I would be more likely to do that if I actually thought the cpap therapy was working. I actually think positional therapy does more for him that the CPAP since he was doing as well or better between the initial sleep study (when I realized he was having apnea events and started trying to encourage him to sleep on his side) and the titration sleep study than he has been since he started on the cpap. But I really think that we need to do something for the central apnea. The Sleep Dr said he thought the cpap would take care of the OA and he would feel so good that it wouldn't be worth bothering with the CA and he called the CA treatment emergent though the first sleep study showed more CA than OA and lost of Mixed as well so I'm not sure what's up with that.

He is on the Holter heart monitor for three days this week and I'm still hoping to get an earlier Echo appointment but if we have any more bad episodes, I'm dragging him to the ER.

Tomorrow we have another virtual appointment with the Sleep Dr Nurse practitioner but she doesn't even have access to the flow charts, only the general numbers and at this point there doesn't even seem to be a way for me to send the oscar files to them.

Ugh.

Share the link to SleepHQ with them - maybe they'll agree to look at it.