Newbe with Complex Apnea

[racprops]

Here is the situation:

I HAD Quadruple Heart Bypass Surgery on Monday Jan 21 2013 in the afternoon.

During my recovery and stay in the Hospitable I was informed I also have sleep apnea , and to make matters worse after two tests I have learned I have complex apnea and will need a ASV PAP Machine.

IT TOOK over 6 weeks after my surgery to stop my chest busting coughing and to recover enough to start looking into my sleep apnea.

Calling around and getting prices of $800.00 plus as a uninsured and self-pay patient I was somewhat unset about what projected would be costs of a system and its up keep.

I learned about Dentist and mouth appliance’s and even with free consolation and a free home study was still facing $2500.00 to $4000.00 estimates…

So I did a home study and the results were so bad the Dentist sent me to a sleep Doctor:

Who said as I had surgery a dental device would not help me. That I will need a CPAP system.

I had a sleep study done and It looks like I will need a second one to figure out wither I can use a Bi-level PAP of will have to get the top of the line ASV-PAP Machine as this study showed I have what they called PAP induced complex apnea (or center apnea)and THAT study is now two weeks out with a week after the test to learn the results and THEN I can order and start using a machine to help me with my sleep apnea. So I am currently about 4 weeks before I can begin treating what seems to be the root cause of my health problems.

All these costs are out of pocket above my surgery bills and without this treatment I stand no real chance of any real recovery.

Now I am going slowly nuts: ( I am writing this at 2.30 AM after waking up..and I am still sleeping in a recliner...)

My sleep Doctor on my first visit was very helpful and when I expressed my concerns about the costs of the CPAP machines..(after all my major discounted sleep study was still costing me $600.00 plus his office visit fee of $125.00) he informed me I could go on line and buy a machine for around $500.00 and even gave me a couple of urls.

On the second visit after the study he started talking about how I will now need a $2000.00 to $5000.00 machine and how I have to do another study to find out if I can use a Bi-Level machine or need a ASV-PAP system…at $725.00 MORE out of pocket. (he also admits I will most likely need the ASV.)

I went back to the internet and found lots of BiPAP and ASV-PAP Machines around $800.00 to $1500.00.

BUT he will not prescribe for any machine until I drop another $725.00 so he can test for a BI-PAP and then do the set up adjustments for the ASV-PAP during the study.

The people selling these machines seem to find his behavior a little odd. (I do)

It seems as the Auto Servo Venlator PAP is so self-sensoring that I should from the first study be able to get it and with a few simple settings (I understand there are 6 main settings) start using it without a 8 hour sleep study and set up of it.

Am I way off base here??

IS there a very friendly Doctor in Phoenix AZ someone can recommend me to for a second opion?

OR a much lower cost to test and set up a ASV -PAP system?

Thanks

Rich

[49er]

Hi racprops,

Glad you made it to the best sleep apnea board None of that censorship stuff.

Hopefully, the ASV experts will see your thread and chime in but while you are waiting, here are two threads to get you started.

viewtopic/t87729/viewtopic.php?f=1&t=65 ... asv+thread - Very long as you will see

viewtopic/t87729/viewtopic.php?f=1&t=85823&hilit=ASV

Good luck to you.

49er

Here is the situation:

I HAD Quadruple Heart Bypass Surgery on Monday Jan 21 2013 in the afternoon.

During my recovery and stay in the Hospitable I was informed I also have sleep apnea , and to make matters worse after two tests I have learned I have complex apnea and will need a ASV PAP Machine.

IT TOOK over 6 weeks after my surgery to stop my chest busting coughing and to recover enough to start looking into my sleep apnea.

Calling around and getting prices of $800.00 plus as a uninsured and self-pay patient I was somewhat unset about what projected would be costs of a system and its up keep.

I learned about Dentist and mouth appliance’s and even with free consolation and a free home study was still facing $2500.00 to $4000.00 estimates…

So I did a home study and the results were so bad the Dentist sent me to a sleep Doctor:

Who said as I had surgery a dental device would not help me. That I will need a CPAP system.

I had a sleep study done and It looks like I will need a second one to figure out wither I can use a Bi-level PAP of will have to get the top of the line ASV-PAP Machine as this study showed I have what they called PAP induced complex apnea (or center apnea)and THAT study is now two weeks out with a week after the test to learn the results and THEN I can order and start using a machine to help me with my sleep apnea. So I am currently about 4 weeks before I can begin treating what seems to be the root cause of my health problems.

All these costs are out of pocket above my surgery bills and without this treatment I stand no real chance of any real recovery.

Now I am going slowly nuts: ( I am writing this at 2.30 AM after waking up..and I am still sleeping in a recliner...)

My sleep Doctor on my first visit was very helpful and when I expressed my concerns about the costs of the CPAP machines..(after all my major discounted sleep study was still costing me $600.00 plus his office visit fee of $125.00) he informed me I could go on line and buy a machine for around $500.00 and even gave me a couple of urls.

On the second visit after the study he started talking about how I will now need a $2000.00 to $5000.00 machine and how I have to do another study to find out if I can use a Bi-Level machine or need a ASV-PAP system…at $725.00 MORE out of pocket. (he also admits I will most likely need the ASV.)

I went back to the internet and found lots of BiPAP and ASV-PAP Machines around $800.00 to $1500.00.

BUT he will not prescribe for any machine until I drop another $725.00 so he can test for a BI-PAP and then do the set up adjustments for the ASV-PAP during the study.

The people selling these machines seem to find his behavior a little odd. (I do)

It seems as the Auto Servo Venlator PAP is so self-sensoring that I should from the first study be able to get it and with a few simple settings (I understand there are 6 main settings) start using it without a 8 hour sleep study and set up of it.

Am I way off base here??

IS there a very friendly Doctor in Phoenix AZ someone can recommend me to for a second opion?

OR a much lower cost to test and set up a ASV -PAP system?

Thanks

Rich

[Pugsy]

Welcome to the forum.
Well...people do self titrate on the ASV machines but it isn't nearly as easy as what we do with our little plain machines.
I am going to strongly urge you to follow the doctor's lead and have the titration study done with the ASV machine.

But there is or was an ASV machine for sale not long ago and it is the top of the line model..newest technology and all that.
The ResMed S9 VPAP Adapt only 900 hours on it which is nothing for these machines. $700
See this thread.
viewtopic.php?f=1&t=87437&p=798490&hili ... gy#p798490

Again, I strongly urge you to get the titration done but if you can get a machine like this then maybe the cost of the sleep study won't hurt so bad.

[Pugsy]

Here's a link explaining the S9 VPAP Adapt
http://www.resmed.com/us/products/s9_vp ... nc=dealers

[racprops]

Thanks for pointing me to this site.

I think I am hoping to be able to buy a ASV-PAP Machine and set it up my self and use the readouts/reports to titrated it my self and avoid paying out $725.00 for a sleep study ESPECIALLY when there is almost a sure thing I will adjust to the machine and need to re-tune it some two to four weeks down the rood.

I fear the Doctor will demand a full night study to do any adjustments or changes.

These are my major questions.

I am looking at a Respironics System One BIPAP Auto SV Advanced Machine with Heated Humidifier.

I am looking for feed back.

Rich

[Pugsy]

Hopefully SWS or JohnBFisher or maybe one of the other ASV users will stop by and offer ideas.
If you were self titration on a plain bilevel machine like I have then I could help but I don't know enough about the ASV machines to offer any ideas that are worthwhile.

[racprops]

49er many thinks I am reading the posts in the links you provided and wow am I leaning...

pugsy also many thanks...

Rich

[Nooblakahn]

I don't want to further scare you, but your pricing on ASV machines seems a little off. The price you mentioned seems more in line with Bipap, but not asv.

Here is a link to the phillips resperonics machine from our host

Here is a link to the resmed machin

The resmed machine is the one I used... that is the same one that is listed in the topic that pugsy mentioned. Just thought I would post this to show why that machine with 900 hours is still listed for 700 bux.

The resmed machine is the one I use, and it has been great at treating my mixed apnea. Agreed with Pugsy, if you haven't been titrated with a standard bipap machine, I would follow your dr's advice and do that test. If you need standard bipap just for a relief from pressure, you may not need the asv. Those machines can be had much cheaper.

[n0hardmask]

Thanks for pointing me to this site.
These are my major questions.

I am looking at a Respironics System One BIPAP Auto SV Advanced Machine with Heated Humidifier.

I am looking for feed back.
Rich

Rich, Welcome to the best forum of really knowledgable and helpful xPAPers. You need to look at http://www.secondwindcpap.com/Used_CPAP.html They carry new and guaranteed used machines for a good price. You will have to get an RX, though, so unless you can talk your Md into writing one, you may have to get the sleep study.
Be very careful if you decide to buy one online and/or from an individual. Besides crooks, you may also get stuck with a machine that's smoky and full of allergens.
Stick around here; read all the good stuff the forum and Wiki offer. We'll help you on your journey. earl

[racprops]

Thanks.

How do you like you face mask?

I think I will prefir it

[old64mb]

Rich,

Unfortunately, your doctor is dead on and you're off base. You need to come in for a bilevel titration before you use either a bilevel or an ASV. Going directly from the straight CPAP settings of your first study to ASV therapy isn't something anyone with a background in sleep medicine would recommend.

At its core, the ASV is a bilevel machine with some very sophisticated additional hardware and algorithms so that it can treat central apnea effectively. The problem is that moving from straight CPAP to bilevel alone is something that is difficult to do without a titration study. The inhalation and exhalation settings - which treat the obstructive side of your hypopneas and apneas, respectively - are often quite different than what those of a straight CPAP. Once those are treated effectively, you can then take those settings and move to the ASV, using the inhalation and exhalation settings as a baseline and then begin tweaking the other settings that treat the central component of your complex SA.

It's possible to slowly play a guessing game and titrate yourself on a bilevel first and then subsequently titrate yourself on an ASV with the bilevel settings as your baseline, but in your case I would strongly recommend against it, since you've just had bypass surgery and thus it makes good sense that your sleep apnea has a strong central component. (The fact that you had centrals presumably show up on two studies, one without any treatment at home, is also a pretty good indicator that you very likely have that central component.)

One thing to keep in mind: a lot of the advice here on self-titration and taking over your own therapy is for people with vanilla OSA, which is relatively easy to figure out and doesn't have particularly dangerous consequences if you get the settings wrong for a bit. You're a more complex patient, and it would be very easy for you to get into real trouble trying to get things right. We can help you tweak your treatment once you get your baseline settings, but you need them first.

It's also disturbing that as you've called looking for machines around no one has explained this to you and has undercut the good medical advice you've gotten from your doctor. As such, I would be wary of buying a machine from any of them.

Once you get your settings, we can also help you try to locate an ASV machine off list price.

Hope that helps, even if it's not what you want to hear.

[STL Mark]

A quick note for you to mention the Respironics ASV machine was just released as a Series 60 model. That means in addition to the heated humidifier you can use a heated hose. It may be a bit pricy to purchase that unit, but it also means that last years system one ASV units will be selling for discounted prices. If you are buying out of pocket, those may become quite attractively priced about now.

[racprops]

Thanks.

This what I need to read, not want I hoped to read but can see it is what I need...

Rich

[JohnBFisher]

... Unfortunately, your doctor is dead on and you're off base. You need to come in for a ... titration before you use either a bilevel or an ASV. ...

I tend to agree. This is ESPECIALLY true with complex sleep apnea. Why? Your doctor (through the use of the sleep lab) needs to find the parameters that are right for YOU. Sure, the machine will hunt for the right pressure to attack your obstructive sleep apnea. Sure it can be opened up wide to address your central apneas. But your problem is that you need just enough pressure and no more to address those central apneas. If you have too much, your central apneas get much worse.

Here are some older links about Complex Sleep Apnea:

Complex Sleep Apnea: It Really Is a Disease
http://www.ncbi.nlm.nih.gov/pmc/article ... .5.403.pdf

The Quest for Stability in an Unstable World: Adaptive Servoventilation in Opioid Induced Complex Sleep Apnea Syndrome
http://www.ncbi.nlm.nih.gov/pmc/article ... .4.321.pdf

Complex Sleep Apnea
http://www.chestnet.org/accp/pccu/compl ... a?page=0,3

So, in summary, I do recommend the titration study. I know it stinks. But you will not get as much benefit and might even see things get much worse - for YOU - if you do not do the study. Again, this is due to the nature of Complex Sleep Apnea, which is a balancing act between enough and too much pressure.

Hope that helps!

[racprops]

I wanted to say thanks and to update everyone on what I plan and why.

First I learned a lot finding these sites and I received a lot of help.

BUT As I was unable to hook up with a person whom had done a self-setup of a AVS nor hook up with a Sleep Tech/Doctor willing to guild me, either here nor in my other efforts:

I did talk with my Doctors office manager and I think they are going to give me a farther brake on costs, so I am going to do the second sleep study and let them get the settings and then get my machine.

Again thanks everyone and thanks to the site owner and the people running this site.

Rich

PS I will be posting what happens and keep you updated.