First night worrying, data even more so

[orand]

Thank you, that’s super helpful.  I especially love the ResMed Titration Protocol document.  It makes the purpose and behavior of each machine very clear.  I checked out the Respironics titration protocol document too, but it’s nowhere near as clear or helpful.

I’m becoming increasingly frustrated with my sleep doc (actually an APRN).  All communication happens through voicemails or patient portal messages that are responded to by medical assistants.

I brought in my data from my first bad night so they could see just how bad it was.  In response, the medical assistant hinted that they might end up recommending trying CPAP instead of APAP to avoid triggering CSA.  I had already considered this too, based on similar advice found elsewhere on this forum.

So I took it upon myself to run an experiment with CPAP at a constant pressure of 4, with no EPR, no ramp, etc.  Over the course of 2 hours and 24 minutes I experienced 28 CA events, 1 RERA, and zero OA events, for an AHI of 11.6.  The two longest CA events were 48 seconds and 39 seconds.  My Wellue SleepU (Viacom) continuous SpO2 monitor’s alarm went off multiple times, with several drops down to 86% in direct response to the biggest CA events.  These kinds of SpO2 drops never occur when I’m not on CPAP.

I let them know I had done this experiment on my own initiative and brought the data in for them to get a copy.  I felt that this convincingly demonstrated that standard CPAP can’t possibly work for me, given that the lowest possible pressure reliably triggers massive CAs.

But nope, the medical assistant replied that “a pressure of 4 was too low” and there wasn’t enough data to suggest a specific pressure.  They recommended having me come in for a titration study.  I asked what it would include and they said CPAP first, gradually increasing the pressure to try to find an ideal pressure.  And if I ended up not tolerating it, then they’d try BiPAP.  I asked if ASV would be included in that titration, and they said no.  I asked what the path forward would be if BiPAP didn’t work for me.  They said they’d bring me in for a second titration study that included ASV.  I asked if the “doc” (APRN) had looked at my data, since nothing the medical assistant said made me feel like they’d looked at my data or were listening to what I was saying, and they claimed that they had looked at the data.

So their recommended path means two sleep studies, which they charge $5,500 each, for a total of $11,000, not including follow-up “doctor” visits.  All for the privilege of maintaining an ongoing relationship with someone who doesn’t listen, and will keep cranking me through the generic, slow process that maximizes profits.  All at the expense of my time, health, and pocketbook.  And in the process, make me feel like CPAP is the enemy rather than the ally it should be.

I am now thinking that I will buy a used ASV from Supplier #2 and set it up myself, bailing on sleep specialists entirely.  I’ll give the doc the option of continuing to work with me if desired, but I doubt they’ll be willing to do that, given that they haven’t changed my diagnosis of OSA to idiopathic central or complex apnea.  Unfortunately I get the impression they won’t be willing to do that until I suffer through at least one or maybe even two in-lab sleep studies.  Perhaps I can show the data to my primary care doc and have them change my diagnosis.

What are the potential downsides of “going rogue” with a used ASV?  I’m totally willing to go out-of-pocket on this, since my weird insurance (it’s not technically insurance) won’t pay for it.  The main downsides I can see is that if my official diagnosis remains OSA, then in the future I will be committed to continuing with my own purchases and treatment until I can get the diagnosis changed, most likely via an in-lab sleep study.  And if I end up switching to a “real” insurance at some point (which will cost more than my current one), they likely won’t cover any replacement ASV purchases until I get a new diagnosis and prescription.  However, it seems that they may still cover replacement masks, hoses, etc. given my current prescription.

Any advice for how best to navigate this?

[orand]

I forgot to mention, one other option I considered is trying to make my own EEAR mask setup with my P30i, and self-titrate the correct length of tubing that eliminates centrals.  This might allow me to stay with my current AirSense 10 Autoset.  But I haven’t seen others doing this with a P30i, and am not sure it’s possible to block both the front vent and the top vent.  Also, I think that would really throw the specialist for a loop.  I figure ASV is the safer bet, even though EEAR intuitively appeals to me as the more natural way of fixing low CO2, rather than the big-hammer ESV approach of forcing breathing even when I’ve over-flushed my CO2.

[SarcasticDave94]

My assessment is this team doesn't know how to deal with CA. Shop for some other medical support team. Say NO to titration if ASV is not included, as it is a waste of your time and money. And BPAP without backup rate will send CA even higher. I see no drawbacks other than paying out of pocket itself on getting used ASV. Make sure run hours are mentioned, although if used, it'll have hours on it. I suppose verify that hours are not excessive for the price. 15-20K hours is about end of life, so do not consider that well used as a good buy.

[orand]

I was just told that I will need a prescription that says “ASV” before a sale will be made. Is there a way to use my existing APAP prescription to buy an ASV machine?

[SarcasticDave94]

Since they aren't the same machine, no I don't think that will do.

[jaswilliams]

Orand,

There are avenues for getting ASV without a prescription but these are from places such as craigslist, dotmed, or similar if you want to get an ASV form any other suppliers you need a prescription.

[orand]

Thanks all, I’m pursuing getting an ASV second-hand that supposedly has zero hours but was built in 2015.

I also intend to pursue getting an official prescription so that I don’t run into issues in the future, but want a machine ASAP so that I can start getting better sooner rather than months from now.

[Sleeprider]

Sometimes your primary doctor will help, but many rely on the sleep specialists which is a dead-end. Once you actually fund your first machine out of pocket and demonstrate efficacy on ASV you might be able to go back to the sleep specialist and ask if they will support your future needs. Very few of us have the resources to waste $11,000 on sleep studies then fund an overpriced machine on top of that. You probably want a doctor's support, but his approach to getting there is simply not viable.

There is a Resmed Aircurve 10 ASV listed in the Bentonville, Arkensas Craigslist for $350. The seller describes it as: "sed CPAP with extra tank, unused nose cushions, hoses, connections, etc." The image is correct for ASV and this would be an outstanding price if you can talk to the seller and feel confident in the sale.

[orand]

Wow, that is indeed an amazing price for an ASV. Unfortunately I’ve already paid for the one with zero hours on it for $900.  It’s on its way from Canada. Should be here in a week and a half.

[Karlin]

I went from a cpap to a bipap. With the bipap I was often recording 50 events per hour. I switched to an ASV and have recently had nights with less than 1.0 AHI. The ASV has made a huge difference, although it took some getting used to. Sarcastic Dave recommended the Resmed Aircurve 10. I think he might have meant Resmed Aircurve 10 ASV.