Success! ASV study next week, craziness too

[stevealive]

My thanks to all that have helped with my posts, and this forum that has helped me learn so much, and hold my own in the story that follows.
It's been a crazy week, with my work load ramped up higher than my typical AHI in the mid to high teens, and me feeling worse by the day. Monday I had a conversation with the nurse from the sleep center, who wanted to lower my pressure from CPAP 9 to 8 after the last oximetry test and add O2 to my treatment. I asked about an ASV titration instead, and she said she would submit both ideas to the head doctor who would review it on Wednesday. Wednesday I get a call from the DME saying they have an order to lower my pressure and do an overnight oxymetry, and I've had no call from the doctor to discuss anything. Great consternation ensued for all when I balked and got a bit cranky as I do when the treatment isn't going well, and numerous phone calls followed to the sleep center (no order placed that day) and back to the DME. Finally it emerges that the order was placed early Monday before the nurse talked to me, and never cancelled, and the DME is just getting around to it two days later. Then I get a call from the head doctor who is has just read my charts. He has much chagrin over all the trouble so far, and suggests another sleep study testing both cpap at 8 with O2, and a test with a new machine with advanced capability. When it turns out that I know all about ASV machines and have been pitching the nurse for it, he's very surprised. So that is all agreed upon (Hallelujah!), and he suggests I go ahead with the change order & overnight oximetry, just for the increased data for the sleep study.
But the fun and games aren't done yet. I have the DME adjust the settings, only to find the next day my AHI has gone up to 24.5, and the settings of my PR1 have been changed from CPAP mode to Auto, range 4 to 8. More consternation, more phone calls, and the DME quoting the order as "set Auto to 8cm". I suggest that refers to the machine itself, as the nurse already knows I've tried the auto mode and she has ordered me back to CPAP mode. No one at the sleep center is answering the phone, and the DME insists that her interpretation of the terminology is correct. Finally yesterday I get the secretary from the sleep center on the phone ( no doctors in that day), who checks my charts and agrees with my interpretation of the order. So I'm back to CPAP mode at 8, which I set myself, as there was no one at the DME to do it. Otherwise I'd be stuck till Monday. Last night's AHI was 10, and the best in a week or more.
The great news is Wednesday night I get another sleep study. I'm very hopeful that the ASV will handle my complex apnea, and the 30 to 40% of each night I spend in periodic breathing. I thank having a data capable machine for knowing that, and also that I often go through an hour at a time of sleep with no events, only to be hammered for the next hour or more. My last sleep study took a clear hour as indication that the titration was successful, but it wasn't the full picture. I hope to alert the lab techs to that.
So thanks again for all the help and support. I'll keep you posted.

[snnnark]

Good news! I look forward to seeing your results on the ASV.

[Breathe Jimbo]

This kind of nonsense is precisely why we MUST be proactive in our own care and not simply worship at the foot of the health care "gods."

[stevealive]

Snnnark- I get a chuckle every time I see one of your posts. My last name is Schnarch, pronounced Snarsh. I've spent my entire life listening to people pronounce my name just like yours

[JohnBFisher]

You will want to go the ASV titration study as tired as possible. An ASV unit can be very demanding on someone who has any type of central apnea and/or periodic breathing.

Essentially, researchers speculate both conditions are caused by an undershoot / overshoot condidition. That is, for whatever reason, you do not breathe enough. This is the undershoot. This causes your body to detect an unacceptable CO2 level in your blood. Your body then responds by increasing your respiration until you blow off the CO2. But they speculate that due to poor sensitivity of the various recptors, you body over does it and drops the CO2 levels quite low. This is the overshoot side of this. And since you have overshot the mark, your body feels less complusion to breathe, either low breathing occurs or a central apnea happens. And once again your CO2 levels escalate to the point your body must again compensate ... and around and around you go.

How does an ASV unit try to break this cycle? Well, when you breathe shallowly or stop breathing, it starts to jack the pressure up to help your lungs function even when you are doing driving them. That the "adaptive servo-ventilation" (ASV) part of the name. Because it helps you breathe fairly normally, you don't experience the repetitive undershoot/overshoot cycle. The periodic breathing and/or central apnea cycle is broken.

But the down side is that you will need to put up with a machine that WILL jack up the pressure. And trust me, if you thought 8 was interesting, a pressure of 25 or 30 can definitely awaken you. It takes more to adjust to it. But you will learn to accept it. It actually will become natural to have the machine ramp up the pressure as you are drifting off to sleep.

It just takes patience.

But on your titration night, try to go in as tired as possible. Exercise early in the day. Get little sleep the night before. The more tired you are the more likely you will be able to get some good sleep.

[-SWS]

Hey, that's great news, stevealive!

Good luck and please keep us posted!

[snnnark]

Snnnark- I get a chuckle every time I see one of your posts. My last name is Schnarch, pronounced Snarsh. I've spent my entire life listening to people pronounce my name just like yours

I chose snnnark cos thats what I sound like just before I stop breathing!

[OutaSync]

Stevealive,

I'm so looking forward to your study results. I never thought I would be saying this, but I love my SV.

Bev

[Mary Z]

Someone please correct me if I'm wrong, although not the only ASV on the market, the ResMed APAIII ST-A (other VPAPIII ST's have been discontinued) is the only one that currently will go up to a pressure of 30. I have tried this machine in Spontaneous mode at 30/25 and found that although I could tolerate the pressure, my mask could not. Also this machine gives does not give AI, or AHI. It may be available by download,but I can't get my machine to recognize the "flow generator" which is assume is is the nine pin to machine to USB connection on computer.
I have not yet gotten my OSA under control with lower pressures. Would glady try this machine as an ASV at lower pressures, or current pressure (25/22) if full data is available though download. Otherwise how would you know it's working if I'm having OSA's at a high pressure (24/20). I assume you are using the machine as a servo vent. Good luck with the trial run. Didn't mean to hijck your thread, just really interested in that machine you're using, and how it all works out for you.