Newbe with Complex Apnea - Best ASV to get?

[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.

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

[cbramsey]

Welcome to the forum Rich!!! We are glad you joined us!!!

You might want to consider some of the suppliers on the CPAP Supplier List.

I understand that Supplier #2 on the list offers "gently used" CPAP machines and may be able to help you.

Best of luck to you.

[racprops]

Thanks. I have been talking with Supplier #2 and he seems to be a great guy.

And has what I think is the right machine and price, but my Doctor is having a cranial annal inversion...

So I am considering seeing another Doctor.

Rich

[SuperSleeper]

I'm hoping others will chime in here, but first of all, I'd recommend you get a paper copy of your complete sleep study report (not just basic summary) with the titration report. (Don't accept a simple one-page summary). You have a complete legal right to a copy of that complete study, since you paid for it in insurance premiums and co-pays. While you're at it, make sure to get a paper copy of your CPAP prescription (if that first doctor gives you one) - you can't purchase a machine without it. You'll need that, and again you paid for it and have a right to a copy of your prescription. Demand it from them and don't take no for an answer.

Then, make a copy of the sleep study report and prescription, and file them away in a safe place for your own records and future use.

Since you're concerned about the motivations of your current sleep doctor, I would recommend you find another sleep specialist, make an appointment, hand him a copy of those reports, explain what happened, and ask for his/her opinion.

Adaptive servo-ventilation (ASV) machines are useful for treating central and complex sleep apnea. The sleep study should have information to indicate whether or not you need basic CPAP, Bi-Level, or ASV.

[Shastzi]

Hi Rich, Welcome to the forum!

Hmm. Sounds like your doc is not only greedy, but has a certain lack of scruples and also likes to kick people when they're down while picking the victim's pocket.
I sympathize with your situation, since I can not afford health insurance or even pay for basic sleep studies. (at this writing)

I suspect that since you have *already* been diagnosed as having complex apnea events, that the autoservo is
the only other machine based option you have.
Why the man will not go ahead and prescribe one to you and expidite starting you down the path to getting the machine set up and adjusted by some good techs really fries me.



Consider finding someone else to handle your case if you can afford to.
(I am not anti-doctor, I am anti-SCOUNDREL. )


The truly bad news is those machines ain't cheap, since they are the 'heavy equipment' among PAP machines.

What I share in this post is a conglomeration of what I have learned from various sources within this forum and some personal experience. Always check with an MD (if you can!)

There are a few M.D.'s that check in here often so hang in there and get their two cents worth too.

Best of Luck with your therapy & stay tuned!

[cbramsey]

And has what I think is the right machine and price, but my Doctor is having a cranial annal inversion...

[racprops]

It comes down to he wants a second night to test me on a Bi Level and then a ASV.

I got a two page printout. We did a split study, and was on a cpap for the second 1/2, and it seems in the report the tech tried to go to Bi Level but did not tell me ha was doing mor testing and fter 8 hours I went home, if I had know he want to try more I would have tried to use it.

He admits I will most likely need ASV but said he needs a full nights study to set up the ASV.

I am now betting that if I need adjustments (highly likely as I understand things WILL change as I adjust to having PAP) he will want another full nights study to readjust it.

The $600.00 I paid was the total price with no insurance copay.

Again I maybe wrong..but it seems $600.00 + for one night seems high. Figure in the normal price of $1200.00 per night...That is about 1/3 my MONTHLY INCOME, on a good month.

A hotel room costs say $100.00, the tech has two subjects per night, what is his pay??

And the test equipment..prorated over its life...and minimum supplies like the sticky pads?

I feel there are a ton of people who need these studies and a lower more reasonable self pay price would bring it a lot more people.

[SuperSleeper]

I guess I don't understand why (if they think you need an ASV), that they would not simply prescribe that. ASVs adjust automatically (hence the name "adaptive"). Maybe I'm missing something here.

I would think that the question of whether you need Bi-level vs. ASV could have been determined in the titration portion of your first sleep study. If you find out that is the case here, I would be tempted to argue that the first titration was a failure on their part for not completing it properly (and that you should not be charged to go in a second time).

Complex and Central Sleep Apnea are not as easy to treat as simple OSA, and unfortunately, more expensive to treat as well.

If it's determined that Bi-Level will be sufficient, that's better as far as cost. (Bi-Levels are usually around 40% to 70% higher cost than Auto-CPAPs, but a heck of lot less expensive than ASVs).

If it's determined that you need an ASV machine, you're talking substantially more in cost. Most new modern ASV machines I've seen available online lately are around $3500. If you can find one online for $1500 as you said, that would be an unbelievable deal. That's usually the price range for a Bi-Level CPAP, not a modern ASV.

[Shastzi]

Yanno, this procedure really should not cost more than replacing the engine in your car. Sheesh!
There is no rocket science going on...

[trish6hundred]

Hi racprops,
WELCOME! to the forum.!
What everyone has said so far.
Best of luck to you.