Good news and bad news

[lydy]

Good news: I had a great pool party (despite never getting to play Zar). Felicia gave me a stuffed tiger that _purrs_. So great. Matt (Dean) did point out the purring was inaccurate. Tigers (and lions) can only purr on the exhale, whereas domestic cats and cougars can purr on the inhale and the exhale, so the little stuffed tiger was purring like a domestic cat. Evidently, there's some sort of thing associated with roaring. You can either roar, or purr on the inhale, but not both. Don't ask me, I didn't do it. Any gate, inaccurate or not, it purrs! I love it love it love it.

Bad news: I just called my insurance company to find out about getting sleep study. I know I have sleep apnea, I had it years ago, and I've put back all the weight I lost, and I can feel myself obstructing as I start to fall asleep, so yeah, I need a new machine and mask and all that jazz. So, my insurance, which is the insurance provided to me By My Company, covers sleep studies as part of major hospitalization, which is to say, I have a $3500 deductible. Sleep studies run in the general range of $2000, a CPAP machine runs in the neighborhood of $800, and mask, tubing, etc. another $200 or so. So basically, it'd be out of pocket. I am...breathless. And annoyed.

Comments

[minnehaha.livejournal.com]

Why not just buy the machine and skip the study?

K.

[lydy.livejournal.com]

I may end up doing that, but they make it hard. In the first place, I don't know what pressure would be most effective. And you can't just buy a machine or mask without a prescription, and you can't get a prescription without a study. I can do one of two things. I can resurrect my old machine, and go with whatever pressure I had before (which would be better than nothing) but it's really old, and as I said, I'm unsure about the pressure. The other thing I can do is cruise Craig's list for an APAP, which does auto adjusting (which isn't as good as having a hand-titrated pressure from a study, but would at least be responding to what I am like now, not what I was like six or seven years ago). There's still the problem of the mask. Used to be, you could buy those without a prescription, but I understand a lot of the places that do that are now requiring a prescription. I suppose I could send them my old study from umpty-ump years ago...actually, I'm not sure precisely what they require, since the last time I bought a mask, prescriptions were not required, and I was going through my insurance, anyway. Masks wear out a lot quicker than machines, and I'd be loath to use a second-hand mask. That's still in the neighborhood of $500 all told, machine and new mask and all that. Eventually, I'll look into it. But at the moment, I've decided that sulking is my best option.

[minnehaha.livejournal.com]

I'd expect an old study is good enough. You've been faithfully using your equipment all these years, and now you need some pieces replaced.

B

[guppiecat]

This displays my ignorance, but can't you figure out the titration yourself over time? Just start where you were the first time around and increase or decrease it until your sleep improves.

It'd take longer, but it's not like you're unfamiliar with the science involved.

[lydy.livejournal.com]

Well, an APAP would make that easier. The thing is, when you're asleep, you're, you know, asleep. Once you eliminate the major stuff, there's still this thing called RERAs, which stands for Respiratory Effort Related Arousals. They're little, tiny obstructions that just wake you up. Not very much. A couple of seconds. Not long enough to remember. And people, including me, are remarkably unreliable reporters of their own sleep. When I had really bad sleep apnea, I thought I slept very, very soundly. I didn't, but that was what I remembered.

Yes, I could do that to some extent, but I'd really rather, you know, have good empirical results and stuff. Which I totally can't afford. Even an APAP won't respond to RERAs. It really only notices apneas. It can distinguish between obstructive and central apneas, for the most part, but that's about it. It can kind of sense hypopneas, but without O2 monitoring, it's not real good either. (I can explain all that but really, do you care?)

Part of the problem, of course, is I know too much for my own good. I should just get a used APAP and be done with it.

[guppiecat]

Could you detect it by filming yourself sleeping at night and watching the video (on fast forward, presumably) the next day?

[lydy.livejournal.com]

Nope. Arousals aren't that obvious. Really, you need EEG electrodes and airflow monitoring to detect RERAs. You need O2 monitoring to detect hypopneas. Maybe I'm just too wedded to a real sleep study, since that's what I do. But there's a lot of data we collect that you just can't get any other way.

I do wonder about sneaking into the lab on Saturday when they're closed and running a sleep study on myself in secret. I might even be able to get away with it. It'd be a very weird thing to do. And if I got caught, I can't even imagine the type of trouble I could get in. On the one hand, I wouldn't be using up anything particularly expensive, for the most part. On the other hand...yeah, a world of trouble, pretty likely.

[guppiecat]

Yeah. Not worth the risk.

However, you might want to volunteer yourself as a training guinea pig.

[evilrooster.livejournal.com]

Well, a good sulk has its place in the emotional ecosystem, too. Useful for figuring out which options bug you most.

[elisem.livejournal.com]

The bad news sucks rocks through a bad bendy straw. I hope there's some useful hack to get you an actual sleep study that doesn't involve worlds of trouble. (If you need forty people to chip in fifty bucks each, I'm in.)

Glad you had a good pool party. Wouldn't mind playing Zar myself sometime. There's a deck around here somewhere, and people might could be rounded up, yah?

[wild-irises.livejournal.com]

That is so wretched. Have you seen this, which is getting linked around in my world.

For what it's worth, my CPAP (which did not cost me a lot of $$ because my insurance was reasonable) is "variable pressure," so it sets itself.

[laurel]

You may already know all this, but just in case you don't (or it can help others)-- the technology of CPAPs and APAPs has advanced rapidly in recent years.

When I first got my diagnosis & gear in 2005, it was possible to use software to get all sorts of useful data from certain CPAPs and APAPs, but it was largely undocumented and unsupported as they didn't want patients doing this on your own. But from what little I've checked up on since then, many machines now can give you a ton of useful info (and it's no longer a secret thing only available to technicians and doctors and so on). I know there's also been big progress made on test at home sorts of things, but I haven't checked into that lately.

Prices have also come down on the machines and masks and in some cases it's cheaper to buy them outright than to use insurance. I used to buy my gear from CPAP.com and that's usually where I found lots of useful info on the latest machines and masks. I also found CPAPTalk forums to be incredibly helpful a few years back, though I haven't been on there lately. I suspect there are still people there in the know and some useful links, etc. I know at one point they were setting up a forum for the selling of used CPAP gear (or extra gear like how sometimes when you buy a mask it comes with two sizes of pillows or whatever and so people would trade or sell the ones they don't use).

We are uninsured but now that unemployment has run out we should be able to qualify for uber-cheap MinnesotaCare unless things have changed drastically. I hope I can finally get a new mask and maybe a new machine. (If I upgrade, I'd be happy to at least loan out my APAP if not sell it.) I don't know what folks have been doing with their old machines when they upgrade, but most people with decent insurance should be eligible for new machines every 3-5 years.

I know a couple of years ago I was able to buy one of my favorite sleep masks new sans subscription via a third party seller on Amazon of all places. The rules and how different retailers and insurance companies observe them seem to vary.

I know a lot of people with good insurance are eligible for full or mostly full compensation for new tubing & masks a lot more often than they remember/bother to get such stuff; I sometimes am tempted to say "hey, if you aren't gonna get a new mask this month or quarter, wanna get me one?" Because my mask is long in the tooth, to say the least.

FWIW I think if you got a good quality APAP (from which you could get data), you'd likely be able to figure out a good pressure to work with or let it do it's auto-titrating thing and it'd still be better than going without.

Hmm, I should look into some of this stuff myself. I'm probably due for a new sleep study and definitely a new machine and well-overdue for a new mask.

[laurel]

that's "sans prescription" not "subscription" though hey-- I think it is actually possible to essentially "subscribe" on some sites to certain CPAP supplies.

[laurel]

Puttering around CPAPTalk.com for the first time in ages and I discovered a mention of SecondWindCPAP who are apparently based in Tracy, MN and even have a brick & mortar store there. Looks like a promising alternative to CPAP.com for reasonably priced gear (without DME markup) and they have gently used gear that they clean and pressure test and all that jazz. Sounds like a licensed tech & CPAP user runs the place.

My fairly old APAP did give me data on apneas & hypopneas and would calculate AHI for me. When using it as an APAP would tell me what pressures it used, etc. Or I'd do a report on my sleep when using it at a specific pressure. I'm a bit curious about how accurate it really is, though. At my sleep study I was titrated at 13, but after a couple of months of looking at data and adjusting my pressure and so on, I wound up thinking a pressure of 9 actually worked better for me. But did it really? Dun dun DUN! No idea. (I forget what pressure I'm using these days, I should probably actually look at the machine once in a while. But I know that if I sleep without it, I'm miserable. And Kevin says he's not observed me snoring or having any difficulties so signs show that the CPAP and my very old mask is still helping. Probably not as well as a new mask would and I may not be at my ideal pressure, but still better than going without. )