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robysue1 wrote: ↑

Sat Nov 23, 2024 12:30 pm

It's important to try to tease out exactly what your father means when he says he's working too much to just breathe.

Yea that is the challenge sometimes.

When we first got this machine he was complaining that it was exhausting him making him keep inhaling way longer than he wanted to.

Thanks for the more detailed explanation. I will see if I can figure a little more of this out.

Well dang, the videos I have found all seem to be for the bi level version and Dad has the ASV version and I'm having trouble figuring out how to change the trigger, cycle or Ti settings because the menu doesn't seem to be the same as the videos I have found.

All I seem to have access to is epap min-max and pressure support min-max and then ramp time and starting epap. We have been using ASV Auto but when I looked in ASV I didn't see any of those other settings!?!?!? is there some additional thing I need to do beyond just getting into the clinical menu?

TCLynx wrote: ↑

Sat Nov 23, 2024 5:53 pm

Well dang, the videos I have found all seem to be for the bi level version and Dad has the ASV version and I'm having trouble figuring out how to change the trigger, cycle or Ti settings because the menu doesn't seem to be the same as the videos I have found.

I've done some googling, and while I can't find the clinical manual on-line, I did find this piece of advertising aimed at clinicians: https://document.resmed.com/en-us/docum ... er_eng.pdf

It does in fact seem to be the case that the AirCurve ASV doesn't have Trigger, Control, Ti_Min, or Ti_Max since there's no "dot" in the ASV column for those things. I apologize for misleading you, but I don't use an ASV and I thought that it would have the same kind of fine tuning clinical controls that the AirCurve 10 VAuto does.

I know it's frustrating, but you and your father might need to mention the fact that the machine seems to be out of sync with his breathing to the sleep doc's office and see what, if anything, they have to say.

It is still worth seeing if increasing the min PS makes it easier or harder for your father to breathe with the machine.

robysue1 wrote: ↑

Sat Nov 23, 2024 6:30 pm

I apologize for misleading you, but I don't use an ASV and I thought that it would have the same kind of fine tuning clinical controls that the AirCurve 10 VAuto does.

I know it's frustrating, but you and your father might need to mention the fact that the machine seems to be out of sync with his breathing to the sleep doc's office and see what, if anything, they have to say.

It is still worth seeing if increasing the min PS makes it easier or harder for your father to breathe with the machine.

Not your fault, even the book that comes with the machine mentions those controls because they send the same book with both the bi pap and asv machines!!!

Spent some time today trying to get him to wear the mask and just breathe and let me know what felt ok and what was uncomfortable. But he is having a bad Lewy Body Dementia fluctuation today and is really confused. It is a real bummer too because he tries soooo hard. Unfortunately TOO hard because we just want him to relax and breathe but instead he is trying to the point of NOT relaxing.

I turned off the ramp and have the min pressure support on 1. I don't think I should up that any more right now because when it was higher he really couldn't sleep with it. When I tried adjusting the epap up he seemed to complain about it.
Right now we are at epap 4-4 and PS 1-8 which means Ipap is from 5-12.

Hopefully the aide is able to reassure him tonight and get him to wear it for more than an hour.

Ah so. I think it's time for an update. He still uses the machine. He is still having nights where he wakes up thinking he is suffocating. I really need some sort of way to monitor his pulse ox along with the ASV data. Or at least have a Pulse ox that can alert me remotely that he is having a problem because at this point, by the time he is trying (difficult because he has dementia and difficulty communicating) to tell us what happened, we can't see what was going on and it is making him scared of using the machine because he thinks it is blocking his air instead of blowing it in his face.

We have had several good nights where he is getting AHI numbers under 10 (even had one night where the number was under 2!) But last night the number was like 6 but he still thought he was dieing.

I'm gonna go take the notebook out to his room and load the data and write down the numbers.

Ok so Dad's Aircurve 11 ASV machine is set to
Ramp off
Mode ASVAuto
Epap 5-7
Pressure Support 3-9
Full face mask

We are still seeing huge amounts of leakage because every time he moves or starts to mess with it, it will start leaking.

To refresh,
He has lewy body dementia (Parkinsons and dementia diagnosed at about the same time the start of 2023 but his complaint that sent him to the Neurologist was his loss of consciousness as he put it but that just meant he could fall to sleep during activities, like while drumming. Neurologist did not send him for a sleep study, I had to request that repeatedly)
and complex sleep apnea (some obstructive but he has central sleep apnea as well) it wasn't till last fall that we finally got him the ASV machine.

here is the Sleep HQ link https://sleephq.com/public/teams/share_ ... a60719e136

So he is waking up having issues where he thinks he is dieing for lack of air.
I need an O2 monitor that can alert us when there is a problem! I had purchased one that had a linker that would send the signal through wifi so I could monitor from my phone from another room because the bluetooth wasn't strong enough to go beyond his bedside but that thing quit working after about a month. I don't want a monitor to wake him up, I want a monitor that will alert myself or the nighttime aide so we can figure out what is going on with him. Since he has dementia and difficulty communicating and everything is always more difficult at night, we need tech that helps us, not something that is just going to irritate and confuse him more.

Any Ideas what I should be asking the sleep Dr for? So far when I ask them, they don't seem to think there is anything available to help with monitoring in real time.

TCLynx wrote: ↑

Wed May 28, 2025 5:11 pm

Any Ideas what I should be asking the sleep Dr for? So far when I ask them, they don't seem to think there is anything available to help with monitoring in real time.

Sleep doctors and clinics aren't usually concerned with remote realtime monitoring.
Look for someone who specializes in respiratory problems, a pulmonologist, a breathing clinic, and ask them for advice. You seem to be saying "I need to know if oxygen desaturation are waking me Dad up at night" (ASV or no ASV).

That said, looking at your data, it doesn't look like the obstructive component of your dad's therapy is properly treated.
The leak rate is so bad that most of the time he's probably not getting the therapy he needs because the machine can't identify his breathing pattern.

TCLynx wrote: ↑

Wed May 28, 2025 5:11 pm

I need an O2 monitor that can alert us when there is a problem! I had purchased one that had a linker that would send the signal through wifi so I could monitor from my phone from another room because the bluetooth wasn't strong enough to go beyond his bedside but that thing quit working after about a month.

You had a whole month of oximetry alerts in real time - what did you learn from it? What changes did you make based on that data? What changes could you make? Could you improve things based on that data?