First night on ASV (updated X2)

I am proud to report that my first night on ASV was very successful. My AHI was 0.1 with 0 centrals and 0 obstuctive apneas. This is down from a high AHI of 85.7 on CPAP. Out of that number 75.5 were centrals. It's just a shame that I had to pay for this machine out of pocket because Medicare and my first 2 sleep doctors said that it was medically unnecessary. So instead of fighting a losing battle I found a sleep doctor that was willing to prescribe the machine and I just had to pay for the machine myself.

What is ASV?

First, I am glad to hear it is working.... I am headed there as well, but cannot get the titration study done before I go to my daughter’s wedding...... so it is the middle of next month.

ASV is Adaptive Serve Ventilation. On CPAP or BIPAP (without the S/T mode) your machine only responds when you take a breath. This handles obstructive apnea very well, because the pressure keeps the airway open, and you can breathe.

Some of us have “Central Apneas” In these cases, our brain does not send out the signal to breath, so there is nothing for the machine to respond to. There is also some other breathing patterns, where we breath shallow or breath in cycles. A normal CPAP or BIPAP cannot handle these.

For us there is then a BIPAP S/T machine. The S/T is Spontaneous or Timed. It looks at your breathing, and if your breathing rate is not enough it tries to help based on the timing.

After that you head to an ASV machine. This looks at each breath, and adjusts for changes in flow volume as well a s timing. It helps the CHS type breathing as well as centrals.

Hawk256 wrote:I am proud to report that my first night on ASV was very successful. My AHI was 0.1 with 0 centrals and 0 obstuctive apneas. This is down from a high AHI of 85.7 on CPAP. Out of that number 75.5 were centrals. It's just a shame that I had to pay for this machine out of pocket because Medicare and my first 2 sleep doctors said that it was medically unnecessary. So instead of fighting a losing battle I found a sleep doctor that was willing to prescribe the machine and I just had to pay for the machine myself.

Well good for you, Hawk256! That's a pretty pricey machine but it is obviously doing the job splendidly. You must be so relieved! How are you feeling?

Suz

That's great news. I hope you feel better using it.

If your AHI stays low go back to your doctor(s) and perhaps they will try to convince Medicare that it's obviously necessary (because it's working) and if you can get Medicare to purchase a machine for you then you can either keep yours as a backup or sell it and recoupe some of your costs. If nothing else it might be easier to get Medicare to purchase the next one when it's time to replace the one you purchased.

Give us a full update in a week or two on the results.

Suzjohnson wrote:

Hawk256 wrote:I am proud to report that my first night on ASV was very successful. My AHI was 0.1 with 0 centrals and 0 obstuctive apneas. This is down from a high AHI of 85.7 on CPAP. Out of that number 75.5 were centrals. It's just a shame that I had to pay for this machine out of pocket because Medicare and my first 2 sleep doctors said that it was medically unnecessary. So instead of fighting a losing battle I found a sleep doctor that was willing to prescribe the machine and I just had to pay for the machine myself.

Well good for you, Hawk256! That's a pretty pricey machine but it is obviously doing the job splendidly. You must be so relieved! How are you feeling?

Suz

I am feeling much better. My sleep seems more sound and so far my morning energy seems to have improved as well. My biggest relief is that I am now breathing through the night instead if having all those centrals. I only hope this new machine continues to provide numbers like this.

Hawk256 wrote:... I am feeling much better. My sleep seems more sound and so far my morning energy seems to have improved as well. My biggest relief is that I am now breathing through the night instead if having all those centrals. I only hope this new machine continues to provide numbers like this. ...

First of all, congratulations! You *knew* you needed better sleep and needed the right tool to help improve your situation. It's a shame that you ran into the roadblock of doctors and Medicare. Truth be told, I suspect the doctors made more of a problem than Medicare. (A luke warm endorsement by a doctor will often cause Medicare to question the purchase). I am fairly certain we have members who have had their units paid by Medicare.

Still, as you note, sometimes you just have to bite the bullet and make things happen.

However, you are not alone in fighting doctors to get the right therapy. I had years of problems before I finally broke down in tears with my current doctor, who finally *really* listened. Due to a progressive neurological problem, I have serious problems with central sleep apnea. I had one doctor tell me that "Because Central Sleep Apnea is very rare, you can not have it". Really? What do the numbers show? Idiot!

Do I sound angry about it? I should be!! Due to the untreated central apneas over the period of about 8 to 10 years, I developed uncontrolled and uncontrollable high blood pressure (even with medication). That caused permanent kidney damage. Though I'm not at the point of needing dialysis, I do need to keep a close eye on things. Gee thanks, doc! As a result, I try to spend time helping other patients who are struggling with central sleep apnea.

Hopefully there will be no problem with Medicare picking up the cost of supplies. The reason is that you will find that with the higher pressure and greater pressure swings of an ASV unit, your mask will get stiffer faster than normal. It will leak more. As a result, I find I need to replace the cushion much more frequently (monthly if possible).

Anyway, here's hoping you have many more good nights ahead of you!

Tom W wrote:That's great news. I hope you feel better using it.

If your AHI stays low go back to your doctor(s) and perhaps they will try to convince Medicare that it's obviously necessary (because it's working) and if you can get Medicare to purchase a machine for you then you can either keep yours as a backup or sell it and recoupe some of your costs. If nothing else it might be easier to get Medicare to purchase the next one when it's time to replace the one you purchased.

Give us a full update in a week or two on the results.

Unfortunately Medicare does not consider machine data as "accurate". They want a full sleep study to verify the findings. I only slept about 2 hours during my 3 different sleep studies and on those particular nights I did not meet the criteria for an ASV machine. I am happy with just paying out of pocket for the machine. That means I can do what I want when I want and don't have to answer to Medicare. Sure it hit the wallet hard, but what price can you put on breathing?

Hawk256 wrote:...but what price can you put on breathing?

I completely understand. IMO there aren't too many things worse then one lousy night of sleep after another.

Second night down. AHI 0.1 again. No centrals, no obstructive apneas. I just can't believe the difference this machine has made. I only wish I had bought one sooner.

Hawk256 wrote:Second night down. AHI 0.1 again. No centrals, no obstructive apneas. I just can't believe the difference this machine has made. I only wish I had bought one sooner.

If they weren't so expensive AND difficult to obtain I'm sure a lot more of us 'tough CPAP cases' would try them.

With two great nights (numbers wise) in a row it looks like you have the worst behind you.

Enjoy and stop by every once in a while and let us know how you're doing.

Tom W wrote:If they weren't so expensive AND difficult to obtain I'm sure a lot more of us 'tough CPAP cases' would try them.

With two great nights (numbers wise) in a row it looks like you have the worst behind you.

Enjoy and stop by every once in a while and let un know how you're doing.

Thanks for your hospitality and yes so far it seems I have made a major step forward. I had 3 sleep studies and 4 different doctors over a period of 2 1/2 years to get where I'm at today. I kept giving the doctors my print outs showing the huge number of centrals I was having. All but the 4th doctor I saw were not interested in machine data. To them if it didn't come from a $5500 sleep study then it didn't exist.

Great stats on your second night! I'm so happy for you. Yours is an excellent example of being pro-active about your health and well being.

Suz

My sleep doctor didn't think an ASV was medically necessary for me, either, even though I was averaging centrals that were 42 seconds long and some were over two minutes. I bought one on my own and have used it now for nearly 4 years with an average AHI of under 1 and many nights with no flags at all.

Fortunately, I was given good advice here.

Hawk256 wrote:Second night down. AHI 0.1 again. No centrals, no obstructive apneas. I just can't believe the difference this machine has made. I only wish I had bought one sooner.

Great job man! I know everyone's different, but I'm curious to know what your settings ended up being on the Phillips machine. I'm currently running mine in APAP mode and only have a few centrals each night now. Everything of an obstructive nature is pretty much handled. Prior on ASV mode my centrals were handled, but I had residual hypopneas... of which I never had issue with before. Weird.

Keep up the good nights!

Z