What should I watch for when they set up my VPAP Adapt SV?

[BlueSky72]

After more than a year of struggle, I am finally getting the chance to trial a VPAP Adapt SV for my Complex Sleep Apnea.

Just to save me further hassles, and to get the most out of my 30 day trial before buying it completely out of pocket, what should I watch for? Are there common mistakes that the sleep techs make when setting up the machine for you? There were lots of problems getting CPAP optimised, and it's only through the help of people like you that I got through it with any benefit, such as it is. I've learnt that I can't rely on most sleep doctors or techs, and I prefer to canvas the advice of experienced fellow patients. Thanks in advance.

[jnk]

I assume you've seen this:

http://www.vpapadaptsv.com/PDF/1011164r ... otocol.pdf

[BlueSky72]

thanks very much JNK, I hadn't seen it. I haven't been given the option of a titration study, they are just going to set it up with me awake, presumably.

I live in a place where sleep medicine is like the wild west. I've had to jump through several (expensive) hoops just to get to this point, so if I can get away without a titration study I'd like to. I know it is best practice, but unless its absolutely essential, I'm hoping that my 9 months on various CPAP machines and my 5 nights of various sleep studies will be sufficient.

The sleep doctors and techs also can't believe that patients freely send each other protocols and manuals - they just can't get their heads around that. They think that any patient who wants to read technical documentation or scholarly articles is a kook.

Thanks again for helping me out - power to the people!

[BleepingBeauty]

I live in a place where sleep medicine is like the wild west. I've had to jump through several (expensive) hoops just to get to this point, so if I can get away without a titration study I'd like to. I know it is best practice, but unless its absolutely essential, I'm hoping that my 9 months on various CPAP machines and my 5 nights of various sleep studies will be sufficient.

Wow, your story sounds like mine. I've been on CPAP for 20 months now. My diagnosis is in my signature line.

I'm still struggling to feel the benefits of effective therapy, too. I've been asking for a trial with an ASV machine, but it hasn't happened. My (new) sleep doctor now says she'll be setting up another sleep study for me (this will be my sixth ), this time with an ASV machine, and I'm waiting for that to happen.

Your situation gives me reason to hope. Thanks for posting about it, and good luck with your 30-day trial.

[BlueSky72]

Wow, your story sounds like mine. I've been on CPAP for 20 months now. My diagnosis is in my signature line.

I'm still struggling to feel the benefits of effective therapy, too. I've been asking for a trial with an ASV machine, but it hasn't happened. My (new) sleep doctor now says she'll be setting up another sleep study for me (this will be my sixth ), this time with an ASV machine, and I'm waiting for that to happen.

Your situation gives me reason to hope. Thanks for posting about it, and good luck with your 30-day trial.

Wow, I am saddened to hear of your struggles. My first 2 sleep doctors don't consider complex sleep apnea to be a genuine condition, and they think ASVs are only useful in Cheyne-Stokes respiration and respiratory insuffiency or CHF etc etc. So, if I had your diagnosis I might have gotten an ASV sooner. I had to travel to another city and see a 3rd sleep doctor who immediately prescribed an ASV. I wish I had pushed for it sooner, but I thought it was too expensive and I trusted my doctors. I am heartened that my struggles have helped even 1 person just by telling what's happening.

Given your very high AHI (mine was only in the 40s) and your C-SR, I would recommend you get an ASV as soon as possible. I am not sure if another study is necessary for you - like me, there is probably already ample evidence: if you have more than 1 or 2 centrals an hour and you feel sick, it means normal CPAP won't help!

I wish you all the very best, Bleeping Beauty (great name too!) Please keep us posted on your progress.

[BleepingBeauty]

Wow, I am saddened to hear of your struggles. My first 2 sleep doctors don't consider complex sleep apnea to be a genuine condition, and they think ASVs are only useful in Cheyne-Stokes respiration and respiratory insuffiency or CHF etc etc. So, if I had your diagnosis I might have gotten an ASV sooner. I had to travel to another city and see a 3rd sleep doctor who immediately prescribed an ASV. I wish I had pushed for it sooner, but I thought it was too expensive and I trusted my doctors. I am heartened that my struggles have helped even 1 person just by telling what's happening.

Thanks, BlueSky. My first sleep doc was useless. The new one refused to order an ASV trial for me, because she just didn't see complex sleep apnea and wouldn't know how to set an ASV for me. (She has copies of all of my previous sleep studies, but it didn't matter.) It was after I did an overnight oximetry a couple of weeks ago, which resulted in my being prescribed an oxygen concentrator, that she agreed to look for a lab to do an ASV titration for me.

Given your very high AHI (mine was only in the 40s) and your C-SR, I would recommend you get an ASV as soon as possible. I am not sure if another study is necessary for you - like me, there is probably already ample evidence: if you have more than 1 or 2 centrals an hour and you feel sick, it means normal CPAP won't help!

As I understand it, some people with complex apnea do adapt to straight CPAP therapy over time. I've definitely seen some improvement over what my life was like before treatment began. I just want it to be as effective as it should be. And I agree with you, that yet another sleep study shouldn't be necessary. But as I said, my doctor says she wouldn't know how to set an ASV for me, so a trial isn't going to happen. (I told her that the manufacturer websites offer information re: settings, but she said she wouldn't rely on that.) I asked her to write me a script for an ASV so I could purchase one if I could find a deal online, but she refused that request, too.

I wish you all the very best, Bleeping Beauty (great name too!) Please keep us posted on your progress.

Thanks (x2)! I've gotten a lot of help here, and I'm sure the folks who know my story will be interested to see where things go from here.

Good luck to both of us!

[BlueSky72]

I would recommend getting a new sleep doctor if at all possible. If not, then get the lab titration asap. I see it as an unnecessary delay for you, but if its the only way you can get the machine, so be it.

I suppose others here have said this already, but by ignoring your sleep study data, and not referring you to someone appropriately qualified to treat your condition with the correct machine, she has been negligent. My doctors 1 and 2 were too, but I managed to get away. I am sad about the 7 or so months of my life that they took from me, and I've worked through most of the anger (except for when there's a new spanner in the works). I find it very comforting to spend time at sites like this where fellow patients share experiences and speak the truth about complex sleep apnea. How can a doctor not see it when it is there in black and white - this never ceases to amaze me. Anyway, we are both heading in the right direction now. Blessings to you.

[hunzee]

When you get home, run your little hose inside the big hose and do away with those crappy clippy thingys.

Start by cutting off one end of the little hose and toss it.
Hook the big hose up to the humidifier and locate a position in the rubber to punch a hole to thread the little hose into.
Use dish soap and push the little hose into the big hose toward the mask end.
Hook up the humidifier end of the big hose and the little hose to the unit. Figure out how much of the little hose needs to be by the unit and push the rest toward the mask end.
Cut the little hose off at the mask end about one and a half inches shorter than the big hose.
Take the hose assembly to the sink and wash off the dish soap.

Get a fuzzy covering for your hose to stop the condensation problem.

Use Limeaway to clean your humidifier and mask. Rinse/wash with dish soap/rinse.

Clean the air intake filter monthly, replace every three months.

Buy a surge protector for that very expensive unit. A good battery backup that filters out the spikes and valleys in the voltage is going to save someone some money sometime.

Going on two years with mine no problemos.

[Mr Capers]

Hi Bluesky,

Best wishes to you. I'm also a CSA (complex sleep apnea) person, who is doing a lot of questioning. My sleep Dr. prescribed a machine, with settings, with no titration, but I seem to be getting some results.

I ended up with the Respironics BiPAP auto SV, which is probably different from your machine. And different settings, and different sex of patient, and different parts of the globe, etc.

But, if you rummage through all the many posts rested gal has catalogued, you will find some material on the Resmed algorithm for treating your problem.

Don't know if this will help. You may have been there already. Being newer at this than you, maybe 3 1/2 weeks on CPAP/BiPAP + auto SV, I'm pulling for you. So far, I'm not doing a lot better, bit the bits i"m getting are so much better than no treatment - no comparison!

Best wishes,
Mr Capers