Traded OSAs for CAs during home APAP trial - What next ?

[Sleeprider]

A few ideas if you have a significant deductible or copay is to get a complete list of in-network providers and shop price. Consider Supplier #30 who will work with a number of insurance companies and sells machines at a price competitive with other online suppliers. Finally Amazon and some other sources can get an Autoset at about $615 or less.

You know the CO2 hack, so that might ultimately solve this problem, and time usually makes a difference. I am wondering what insurance you are using. It sounds like the RT is your gateway to treatment and coverage, and that is a bit unusual. Have you checked directly with the insurer or considered a second opinion?

[Stom]

A few ideas if you have a significant deductible or copay is to get a complete list of in-network providers and shop price.  Consider Supplier #30 who will work with a number of insurance companies and sells machines at a price competitive with other online suppliers. Finally Amazon and some other sources can get an Autoset at about $615 or less.  

No DME coverage at all. So I'm strictly looking at cash price. The amazon sellers seem to be doing something sketchy. I'm under the impression that ResMed has advertised minimum price requirements for their retailers and that these sellers are selling the Autoset 10s on the sly somehow. If it's a sealed factory unit with a US warranty, I don't really care if ResMed has a potential beef with them -- except that you can't send an Airsense 10 directly to ResMed for warranty. It has to go through the DME. So, a sketchy DME could make using the warranty difficult or impossible.

You know the CO2 hack, so that might ultimately solve this problem, and time usually makes a difference.  I am wondering what insurance you are using.  It sounds like the RT is your gateway to treatment and coverage, and that is a bit unusual.  Have you checked directly with the insurer or considered a second opinion?

Yeah, I've got some options. Ones I wouldn't know about absent you and the board - so, thank you for that :-)

I'm with Kaiser on a good AHA plan. Kaiser is pretty good as far as HMOs go, but they are data driven and a bit of a factory. The home test was handed out in a class (with powerpoint slides and an RT) of 12 people that taught us how to use the devices. Upon receiving the results, the APAPs were handed out in a 6 person class with powerpoints and an RT.

I can request a telephone appointment with a sleep doc - and maybe even an in person one - but seems like there is a good chance he'll say the same thing based on the data the way the other cogs in data driven org would say to go - that the trend is good and I need more time on PAP to get used to it. I don't meet the apparently common standard of care metric of equal or greater than 15 AHI to necessitate additional testing or moving to ASV (or the I'm involuntarily falling asleep during the day metric - which I also don't meet, even though I'm tired, but not fatigued, during the day), and I'm pretty sure that EERS is off formula for Kaiser in any case. So, the question is whether to pull the sleep doc trigger now, or try PAP on my own and then request a sleep doc with data in hand can point to saying it just isn't working.

[Spy Car]

A few ideas if you have a significant deductible or copay is to get a complete list of in-network providers and shop price.  Consider [/url][url=http://www.apneaboard.com/forums/Thread-CPAP-Supplier-List?pid=31#pid31]Supplier #30 who will work with a number of insurance companies and sells machines at a price competitive with other online suppliers. Finally Amazon and some other sources can get an Autoset at about $615 or less.  

No DME coverage at all.  So I'm strictly looking at cash price. The amazon sellers seem to be doing something sketchy. I'm under the impression that ResMed has advertised minimum price requirements for their retailers and that these sellers are selling the Autoset 10s on the sly somehow. If it's a sealed factory unit with a US warranty, I don't really care if ResMed has a potential beef with them -- except that you can't send an Airsense 10 directly to ResMed for warranty. It has to go through the DME. So, a sketchy DME could make using the warranty difficult or impossible.

You know the CO2 hack, so that might ultimately solve this problem, and time usually makes a difference.  I am wondering what insurance you are using.  It sounds like the RT is your gateway to treatment and coverage, and that is a bit unusual.  Have you checked directly with the insurer or considered a second opinion?

Yeah, I've got some options. Ones I wouldn't know about absent you and the board - so, thank you for that :-)

I'm with Kaiser on a good AHA plan. Kaiser is pretty good as far as HMOs go, but they are data driven and a bit of a factory. The home test was handed out in a class (with powerpoint slides and an RT) of 12 people that taught us how to use the devices. Upon receiving the results, the APAPs were handed out in a 6 person class with powerpoints and an RT.

I can request a telephone appointment with a sleep doc - and maybe even an in person one - but seems like there is a good chance he'll say the same thing based on the data the way the other cogs in data driven org would say to go - that the trend is good and I need more time on PAP to get used to it. I don't meet the apparently common standard of care metric of equal or greater than 15 AHI to necessitate additional testing or moving to ASV (or the I'm involuntarily falling asleep during the day metric - which I also don't meet, even though I'm tired, but not fatigued, during the day), and I'm pretty sure that EERS is off formula for Kaiser in any case. So, the question is whether to pull the sleep doc trigger now, or try PAP on my own and then request a sleep doc with data in hand can point to saying it just isn't working.  

Hey Stom, I'm also with Kaiser (in SoCal). My initial patient experiences were much as you described (large classes with techs, then group machine dispensing with a DME, and no face-to-face with a sleep doc).

One upside was they dispensed a ResMed AirSense 10 Autoset. I'm sure they view this top of the line machine as a way to cut down on doctor's time.

Due to this forum and Sleepyhead software, I was able to see when the Central Apnea portion of my Complex Apnea started to rise. My AHIs were never that high (except for a 5 night trial of Bi-level on a machine borrowed from Kaiser's sleep clinic), but I wasn't feeling so hot.

Thanks to my guru Sleeprider and other knowledgeable member's advice, I was able to ask for an appointment with a real (and very good) sleep doc at Kaiser. And I went into the meeting with knowledge. He did have me trial Bi-level (ResMed AirCurve) and it was a huge fail on his settings.

The upside of that failure was I got to do a study in a sleep lab that showed the efficacy of ASV. Getting an ASV was a boon for me.

I doubt very many patients at Kaiser have been approved for ASV with AHIs as marginally high as mine. That's my impression, anyway. But persistence and forum-gathered knowledge paid off in getting the therapy I need.

If you are feeling poorly and need a solution my advice is to gather as much knowledge here as you can and then see a Kaiser sleep doc in person. In my experience, it is possible to move out of the cookie cutter approach and to get more individualized care, but it takes self-empowerment and self-advocacy.

Hitting on this forum is a major step in the process.

I wish you the best. ASV has been great for me. I hope you find a solution that works for you.

Bill

[Sleeprider]

Nice to see Spy Car back. That was a long and difficult road to travel, and you can read about it by viewing his post history.

What we are both saying is you deserve effective treatment that will return your life to your control and yield comfort and benefits you are yet to experience. You will have to fight for it rather than accept that your high central apnea is somehow normal or will fix itself. I don’t think so, and suggested ASV might be in your future. Given your insurance situation we can probably get you hooked up at an affordable price point, but first you need to insist on seeing a real doctor. No RT should be empowered to make you accept ineffective therapy.

[Stom]

What we are both saying is you deserve effective treatment that will return your life to your control and yield comfort and benefits you are yet to experience. You will have to fight for it rather than accept that your high central apnea is somehow normal or will fix itself. I don’t think so, and suggested ASV might be in your future. Given your insurance situation we can probably get you hooked up at an affordable price point, but first you need to insist on seeing a real doctor. No RT should be empowered to make you accept ineffective therapy.

Thank you both for the information and encouragement. I do plan on pursuing this beyond the current level of treatment. I'm just not sure of the order yet. Get more data on APAP first, or try to challenge a sleep doctor based on current data. The thing is that I don't know how low the centrals can go under PAP until I try longer, but I also recognize the contradictory problem of trying to minimize centrals on an APAP, and then undermining the data that the APAP is not the best treatment.

I'm a bit gun shy on this because I advocated for myself 11 years ago to get my first sleep study, back when I had catastrophe-only coverage, which meant paying cash for it, and getting quoted all the inflated rates labs have so they can negotiate down from them for *insurance companies*, but not not cash customers, who can afford it less. The sleep doctor at the time wanted to treat the mixed apneas strictly with medicine for my nasal congestion, which I tried until my nose bled. Then I got him to write an APAP prescription, which a local DME refused to fill after looking at my sleep study - which was, I now understand, a good call on their part, because the old study was half centrals. I wish that DME was still in business now :-) Then I gave up for a time... :-/ (Kaiser claims their were no centrals in the WatchPat home study they just did.)

So, as a result, I'm a little shy of being pushy, even though I know I have to be my own advocate. Last time it cost me a couple of thousand out of pocket between the lab study and the pulmonologist visits and didn't yield any improvement in sleep.

[Spy Car]

@Stom, I'm sympathetic to the economic realities. I was lucky in that we have 90% DME coverage and I don't think the in-lab sleep test cost us anything. If I had to pay full freight for an expensive APAP, then a very expensive lab, then a very (very) expensive ASV. it would have been a much rougher trip.

I don't know how badly you are feeling with the CAs? I was doing poorly. ASV was a boon for me. A dramatic improvement. It is too bad there isn't an easy way to do "trials" with loaners. My Kaiser sleep center has loaner AirCurve 10 Bi-levels, but no ASVs.

I cant say what worked for me will work for you, but it seems the vast majority of those with complex/mixed apneas love ASV. I do.

I wonder if a Kaiser sleep doc (or even your dentist) would write a prescription w/o an in lab study if you wanted to purchase a machine from a place like Supplier #2, knowing you had no DME coverage?

A new or gently used machine could save you a lot vs full DME prices. I don't feel like I learned anything from the sleep study that I didn't already know. It was just jumping a hoop AFAIK.

I'd talk to a sleep doc about your realities. Maybe they can help make it easier under your circumstances.

Bill

[Spy Car]

Nice to see Spy Car back. That was a long and difficult road to travel, and you can read about it by viewing his post history.

What we are both saying is you deserve effective treatment that will return your life to your control and yield comfort and benefits you are yet to experience. You will have to fight for it rather than accept that your high central apnea is somehow normal or will fix itself. I don’t think so, and suggested ASV might be in your future. Given your insurance situation we can probably get you hooked up at an affordable price point, but first you need to insist on seeing a real doctor. No RT should be empowered to make you accept ineffective therapy.

Well said!

Bill

[Stom]

Corr-a-flex and the Whisper II swivel vent are easy to search for by name, but the Fisher & Paykel non-rebreathing valve is a bit tougher to be sure of.

Fisher & Paykel make a "400HC206 Vented Non-Rebreathing Valve," which is used for the Oracle mouth mask and attaches to the mask flexitube. It's shown on their in their PDF catalog. And it's available on the internet, but generally in reference to the Oracle mask and without the part number listed.

I can't tell if this is the right part, if the design has changed or if the computer renderings in the catalog just look radically different than the photos of replacement flexitube kits that have the valve on it.

Also, without having one in my hand, I can't tell what connector would be needed to interface the valve needs to connect to a male mask connector. (5913 is not a Fisher & Paykel part number.)

Thanks :-)

(I did wind up with an APAP, and I'm keeping ASV in mind if APAP doesn't work for me relatively soon. I'm going to see how the stats and my sleep go for the next month. I'm curious about what EERS could do, but I want to establish something resembling an APAP baseline for comparison.)

[Sleeprider]

The valve is actually a "Respironics Whisper Swivel Valve", and if you search for that, you will find many hits between $22 and $25. It's a replacement part and should not require a prescription. If anyone has an older mask, they might even part it out. Any brand exhalation port that has a built-in swivel will work fine. I think my old Resmed FX nasal pillows had an exhale port in the connector swivel. As long as it vents air under pressure, that is all that is needed. It is not really a valve, but a controlled leak that ensures exhaled air is exchanged.

[Stom]

The valve is actually a "Respironics Whisper Swivel Valve", and if you search for that, you will find many hits between $22 and $25.  It's a replacement part and should not require a prescription.  If anyone has an older mask, they might even part it out.  Any brand exhalation port that has a built-in swivel will work fine.  I think my old Resmed FX nasal pillows had an exhale port in the connector swivel. As long as it vents air under pressure, that is all that is needed.  It is not really a valve, but a controlled leak that ensures exhaled air is exchanged.

Thanks :-)

The Whisper Swivel II is easy to locate thanks to the relatively unique name. I'm trying to find the bit you don't think is really needed, the in-line non-rebreathing/entrainment/anti-asphyxia valve (aka the NRV). (Based on my first and only experience with lab titration I still psychologically associate PAP machines with suffocation, so whether I really need it or not, I'm at least initially interested in including an NRV in the circuit for a nasal mask - my FF already has one built in, so if I were using that there would be no need to source an in-line one. Not so for the nasal mask.)