ASV Success Story

After months of disappointment with CPAP and an AHI of nearly 30.0 (mostly pressure-induced Centrals), I am delighted to report that after a month with my new ASV machine (S9 VPAP Adapt) my average AHI is now .99 It did take a bit of adjustment to the ASV but, boy, was it worth it! And, best of all, I'm able to use my TAP Pap nasal pillows with no problems at all (probably due to the fact that my pressures don't ever rise about 19cmH2O.

If there's anyone out there who's suffering from CompSA, or pressure-induced Centrals, do whatever you can to get switched to an ASV-capable machine. For me at least, it's been a life-altering experience. I haven't taken one nap since I started on ASV and even managed to complete a half-marathon (my first-ever half-marathon, my longest race ever by far, and my first race of any kind in more than 25 years!) with my daughter 2 weeks ago. I just turned 60 and I feel better than I have in at least 15 years.

Congratulations.

It's been a long journey since we first saw your very first cpap reports...ugly they were. It's unfortunate that it took as long as it did but believe it or not there are people who it takes years before they get it figured out that they ended up with complex sleep apnea due to the pressures themselves. They get brick cpap machines and don't have any way to know what is happening...they just know they feel awful. Unfortunately I suspect this also is a factor in the people simply stopping the cpap therapy and the machine goes into the closet.

I am so glad that we got you headed in the right direction as soon as we did and you are finally feeling the benefits of quality therapy.
Good job.

Pugsy wrote:It's been a long journey since we first saw your very first cpap reports...ugly they were. It's unfortunate that it took as long as it did but believe it or not there are people who it takes years before they get it figured out that they ended up with complex sleep apnea due to the pressures themselves. They get brick cpap machines and don't have any way to know what is happening...they just know they feel awful. Unfortunately I suspect this also is a factor in the people simply stopping the cpap therapy and the machine goes into the closet.

I am so glad that we got you headed in the right direction as soon as we did and you are finally feeling the benefits of quality therapy.
Good job.

Thanks Pugsy! Your advice and counsel throughout the process was invaluable!

Pugsy wrote:It's been a long journey since we first saw your very first cpap reports...ugly they were. It's unfortunate that it took as long as it did but believe it or not there are people who it takes years before they get it figured out ...

Yup. In fact, I had doctors telling me that "Central Sleep Apnea is very, very rare. So, you can't have it." I would explain over and over and over that I would stop breathing as I was falling asleep. And I would stop breathing so long that I would awaken in a complete panic because of the increased CO2 in my blood stream. I changed doctors. I tried numerous sleep studies. I would explain this over and over and over again to each doctor. And every one of them ignored what both I and my wife were telling them.

It was not until I broke down in tears when my current doctor ordered yet another BiPAP study that my current doctor backed up and said "What's wrong?". I explained yet again that as I fall asleep I stop breathing. But I stop so long that my machine (a Respironics Series M Auto BiPAP at the time) would turn itself off. That meant that I would stop breathing for more than a minute at a time. I asked him "What will change, doing just another BiPAP sleep study?". He finally heard and understood what I had been trying to tell my doctors for almost a decade!!

Damn thing is that the damage had already been done. I had permanent kidney damage. It's not progressing. But "Damn!". I would love to shove my bills into a lot of different faces to have them LEARN to listen.

That's part of why I try to help folks like the OP on this forum. If at all possible, I try to help people shorten the time they have to spend with other devices, if they also are fighting serious central apneas (from whatever cause).

So, rd1978, congratulations on successfully adapting to ASV therapy. As I keep telling folks, if you can adapt, the reward is a great night of sleep and the feeling that you can once again tackle the world. May you have many more nights of wonderful sleep.

JohnBFisher wrote:

Pugsy wrote:It's been a long journey since we first saw your very first cpap reports...ugly they were. It's unfortunate that it took as long as it did but believe it or not there are people who it takes years before they get it figured out ...

Yup. In fact, I had doctors telling me that "Central Sleep Apnea is very, very rare. So, you can't have it." I would explain over and over and over that I would stop breathing as I was falling asleep. And I would stop breathing so long that I would awaken in a complete panic because of the increased CO2 in my blood stream. I changed doctors. I tried numerous sleep studies. I would explain this over and over and over again to each doctor. And every one of them ignored what both I and my wife were telling them.

It was not until I broke down in tears when my current doctor ordered yet another BiPAP study that my current doctor backed up and said "What's wrong?". I explained yet again that as I fall asleep I stop breathing. But I stop so long that my machine (a Respironics Series M Auto BiPAP at the time) would turn itself off. That meant that I would stop breathing for more than a minute at a time. I asked him "What will change, doing just another BiPAP sleep study?". He finally heard and understood what I had been trying to tell my doctors for almost a decade!!

Damn thing is that the damage had already been done. I had permanent kidney damage. It's not progressing. But "Damn!". I would love to shove my bills into a lot of different faces to have them LEARN to listen.

That's part of why I try to help folks like the OP on this forum. If at all possible, I try to help people shorten the time they have to spend with other devices, if they also are fighting serious central apneas (from whatever cause).

So, rd1978, congratulations on successfully adapting to ASV therapy. As I keep telling folks, if you can adapt, the reward is a great night of sleep and the feeling that you can once again tackle the world. May you have many more nights of wonderful sleep.

Thanks John! I also want to go on the record to thank you for all the great advice and support you provided me when I first got the new ASV machine. My DME completely screwed up the settings they were provided by my Dr. Thanks to you, we got that straightened out quickly.

That's very great to hear you're having success. Did you have any central apnea before being treated or has it all been pressure induced apnea?

icipher wrote:That's very great to hear you're having success. Did you have any central apnea before being treated or has it all been pressure induced apnea?

Thanks. I actually had zero centrals until I was put on CPAP. All pressure-induced. Formal diagnosis is "CompSA."

Congratulations on your success with ASV.

I hope to get my new ASV machine this week, got my sleep study report Friday verifying The need for such a machine after 3 years on APAP.

bwexler wrote:Congratulations on your success with ASV.

I hope to get my new ASV machine this week, got my sleep study report Friday verifying The need for such a machine after 3 years on APAP.

Best of luck to you!

the Resmed S9 Asv machine - i've got the one with auto Epap and it is by far the best machine i've used - most comfortable and really controls the apnea, pretty much from the first night i used it. The technician at the sleep lab said that he thinks that it would actually save a huge amount of time and money if everyone was just put on these machines right from the start since he's found that no one ever comes back having failed treatment with these machines which is Not the case with the other machines.

johnthomasmacdonald wrote:the Resmed S9 Asv machine - i've got the one with auto Epap and it is by far the best machine i've used - most comfortable and really controls the apnea, pretty much from the first night i used it. The technician at the sleep lab said that he thinks that it would actually save a huge amount of time and money if everyone was just put on these machines right from the start since he's found that no one ever comes back having failed treatment with these machines which is Not the case with the other machines.

The thing is that ASV is only required for about 15% of CPAP users. If someone did not need ASV but was given an ASV machine anyway, that particular functionality (i.e. Pressure Support) would simply never kick in. So, yes, the machine would, technically speaking, work for everyone. However (and this is a really big HOWEVER), the cost of the ASV-capable machines are something like 300% more expensive than non-ASV machines. Given that only about 15% of SA sufferers would ever require ASV, It's understandable why insurance companies make you "prove" you need ASV before they approve it.

Right, but you might see the reverse pressure:

Instead of spending lots of money on multiple lab tests, doctors' visits, etc., insurance could spend slightly more on the device and be done with it. According to standard economic theory (I know, healthcare hardly ever fits that), if the manufacturer can sell more ASV units, they don't have to charge as much to recoup development, testing & certification costs.

But of course it the bureaucracy has its own inertia, with existing protocols and reimbursements, so it's not clear how you would negotiate "bulk" discounts for purchasing more ASV units in order to make the bulk purchase a net gain.

...and that's totally separate from the question of whether everyone would benefit from ASV.

sawinglogz wrote:Right, but you might see the reverse pressure: ... Instead of spending lots of money on multiple lab tests, doctors' visits, etc., insurance could spend slightly more on the device and be done with it. ...

And of course by going with the "One Size Fits All" theory, they would miss ALL of the other issues that might occur with sleep. It would do NOTHING to help someone with narcolepsy. It would do NOTHING to help someone with Periodic Limb Movement Disorder ... and the hits keep coming!

Yes. The sleep study is expensive. And yes, there is no doubt that increasing the sales of ASV units would decrease the average cost. But we would skip that important step known as diagnosis!! Without the objective evidence of a sleep study we would be left feeling our way in darkness.

(Sawinglogz, I recognize you understand this ... That's implicit in your wording ... I just point it out for the world in general!)