Left Adrift?

[Kaythu]

Had my sleep study (half night without CPAP, half night with) in June and was diagnosed as mod/severe OSA. The doctor at the sleep center prescribed a cpap machine (Resmed Escape) and mask (which I have changed three times to find a comfortable one that doesn't leak). After being on the machine for a week I had a follow up appointment with the sleep doctor who pretty much told me what the DME had already told me, asked how I was doing, and said that she usually makes an appointment for a one year follow-up but unless something changed (like losing 50-60 pounds) then I really didn't need to go back.

I'm wondering if it is right that no one is checking that my apnea is under control and is it appropriate to be cut adrift like this? My DME said that the insurance company will probably request a compliance check after 3 months but as far as I can tell all my machine is going to tell them is that I have been using it.

Should/can I request a CPAP that gives me data so I can check things out for myself? Should I be expecting more from my doctors?

Thanks for your input

Karen

[cflame1]

A lot of people around here have or have had doctors like that. Plus DME's that do little or nothing to help their compliance.

This place on the other hand is very helpful with trying to figure stuff out, finding ways to make things better.

The machine that you want? Depends on whether you want to know enough to be able to control something that the doc has basically left you hanging with or not?

If you do... which most of us do. Then at minimum you need to get a machine with more than just compliance data. If you'd rather not deal with the study and the doc again... go for an auto.

[Kaythu]

Thanks for the reply. Am I correct that the best path to follow is to research machines and have one in mind and call the sleep doctor and ask her to prescribe what I want? I assume the DME won't do anything for me without something from the doctor?

Sure is a lot to learn about OSA and dealing with the powers that be.

Karen

[SleepingBeauty]

Welcome to the board!

I had a similar experience to yours. I followed the advice like cflame1 just gave you, I purchased a machine with the ability to write data to a card. I also bought the software and reader. In the beginning, I was checking it daily. Now that I'm more adjusted to CPAP, I download the information twice a week.

The moring after my study, the technician told me how serious apnea was, listed a few of the things that could happen to me if I didn't use the machine, and told me I could die if I didn't comply. Of course, that gets your attention!

Then, after waiting about 6 weeks, I was given a machine, about 5 minutes of instruction, patted on the head and told to come back if I had any problems.

I felt as you must right now. That's when I started reading all I could about apnea and fortunately found this site. Read all the information here and consider taking charge for yourself.

[Guest]

Karen,

What you're experiencing is why the state of CPAP compliance is so low.

Assuming that you're going to want to make the best of your therapy, you should at least try to get your machine upgraded to the Elite model. It's a straight CPAP, but will give you information on your therapy. Autos or APAPs are harder to get, if insurance is paying.
If you have your prescription (and should have it), you could purchase a CPAP or APAP of your choice through CPAP.COM to use as your primary machine and keep your insurance-paid machine as a backup.

This is YOUR therapy, after all, and you deserve the best equipment you can get.

Many of us actually cut the strings with our sleep doctors after a few visits. In many/most cases, they're only concerned about their income $$$. With a machine that collects detailed statistics, we can monitor our therapy just fine without their help.

Best wishes,

Den

[Guest]

Thanks for the reply. Am I correct that the best path to follow is to research machines and have one in mind and call the sleep doctor and ask her to prescribe what I want? I assume the DME won't do anything for me without something from the doctor?

Sure is a lot to learn about OSA and dealing with the powers that be.

Karen

CORRECT! (or all counts).

Den

[Slinky]

Well, now that you have the Humidaire 3i for that Resmed S8 Escape you are going to want either the Resmed S8 Elite (fully data capable but a straight CPAP) or a Resmed S8 AutoSet Vantage. It is NOT at this date going to be easy to get the DME to agree to exchanging that Escape for an Elite, much less exchange it for a Vantage.

And its going to be even more difficult to sell the DME on the idea of exchanging the Escape if the new script is written by your family doctor rather than the doctor originally ordering your equipment.

So - I would try this tack: make an appointment w/the sleep doctor. Be right up front, you were given a bare-bones, compliance data only CPAP at a pressure based upon a 1/2 night of sleep in strange surroundings and a bunch of wires and mask slapped on your face and then just turned adrift. You are surprised and disappointed that your doctor could care so little about your health and welfare that she would just turn you loose after one week of CPAP therapy w/o a fully data capable xPAP. And given that is the case you would appreciate it if she would write you a new order for the Resmed S8 AutoSet Vantage with data card so that you would not have to buy a new humidifier and so that more importantly the data is there to monitor your CPAP therapy and to know what adjustments that may need to be made. You would appreciate her setting your minimum and maxium pressures at reasonable levels based on your titration pressure and not just wide open 4 cms to 20 cms.

You may have to negotiate down to the Resmed S8 Elite w/EPR and data card but that Elite is fully data capable and a very good CPAP. I have one and love it. You can EASILY access the critical data via the good size, easy to read LED screen. It would take a little longer than w/the AutoSet Vantage but there is enough data provided via the Efficacy Data menu to adjust your pressure if needed.

If you have good rapport w/your family doctor enlist his assistance w/this matter. ESPECIALLY if your family doctor referred you to this sleep doctor or sleep clinic. As a last resort you could ask your family doctor to rewrite your order for the AutoSet Vantage but I wouldn't have a whole lot of hope that his order would carry much weight w/the DME supplier since they have that original order from the sleep doctor.

Another alternative is to call your insurance company and ask them what local DME suppliers they are contracted with and hope they are contracted w/more than just the one you have now. The problem w/this is that the other DME suppliers might not to work w/you since you've already gotten equipment w/the current one.

You can TRY returning all your equipment to your current supplier and tell them that unless they provide you w/a fully data capable Resmed S8 Elite they can have everything back and you will go elsewhere. But don't count on it necessarily doing the trick. They have your signature on that contract when you got your equipment. Your chances of them exchanging the Escape for the AutoSet Vantage is just about nil to none. Altho stranger things have happened on occasion. But rarely.

Unfortunately, the AutoSet Vantage alone will cost you more thru an online DME supplier than it would to self-purchase a Respironics M Series Auto w/A-Flex bundled w/integrated heated humidifier online. If you have the finances to do so, the Escape is a good machine even if only compliance data capable and would make a good back up machine.

Just keep in mind that your current DME supplier has you by the short hairs w/that contract so there is no sense in getting belligerent w/them. You can catch more flies w/honey than w/vinegar. Diplomacy is definitely called for. The same holds true for the sleep doctor. You wanna lay a diplomatic guilt trip on her but belligerence or blatantly putting her on the defensive isn't likely to get you far.

You can TRY asking your insurance company to intercede. They pay the same for any E0601 HCPCS coded CPAP; bare-bones or fully data capable autoPAP. But it is the rare insurance company that will back you up on this.

That's about all the ideas I have to offer. Hopefully someone else can come up w/a better idea or ideas. Good luck!!!

[rested gal]

I felt as you must right now. That's when I started reading all I could about apnea and fortunately found this site. Read all the information here and consider taking charge for yourself.

Excellent advice!

Karen, one of the best resources on this message board to get you up to speed is in some of the sections of the "yellow lightbulb" at top of page...Mile High Sleeper's blog.

Perhaps easier is to just go straight to her excellent blog at:
http://www.smart-sleep-apnea.blogspot.com

Karen,

What you're experiencing is why the state of CPAP compliance is so low.

Amen, amen, AMEN to what Den said.

Karen, please check your Private Messages (button at upper right of this page.)

[Kaythu]

Wow, thanks for all the advice. I'm so glad I found this board. I feel much less alone in this. And it is a relief to be able to ask knowledgable people for their take on things rather than having to 'reinvent the wheel' on my own. Time to start the research and rehearse how I am going to present my request to my doctor.

Karen

[Bellcrest]

When I told my sleep doc that I still woke up with a start and panic on occassion especially when rolling over onto my back, he agreed to change my script to apap.

That wonderful advice came from this board. I love my apap. I would never have remained compliant if I had had to stick with the original basic cpap (no cflex) that I was originally given.

[shippy]

Strap it on, turn it on, and make sure you use it four hours per night, basically what i was told and lose weight also was thrown in the conversation, along with come back in six months. Pretty standard sleep doc treatment for most of us out there. If it were not for finding cpaptalk and this forum i would still be floundering around lost, they (sleep docs and dme's) don't want you to know anything else.

Dale

[socknitster]

All of the advice here is really good. I would just add my experience to see if it helps.

When I went to the dme for the first time, I came with a ream of paper printed out from cpap.com (our hosts) about all of the different models of machines and masks. The prices were clearly there and I had made marks and notes on the pages. The message this sent to them was: I have done my research and I know what things cost and I also know I can buy online. It was a veiled thread bc I never said anything. But my paperwork, that I kept referring to as we talked, made it very clear.

They set me up with a non-data machine. I immediately objected, saying I wanted a fully data compliant machine. They told me that I was the first person to ask for that, but that they would order one for me. Two weeks later it came. Luckily for me the wholesale prices for m-series pro bipap and m-series auto bipap are similar, so I happened to get the auto. I don't know how the prices work out with the resmed machines.

The deal is this: they don't want to lose the rental fee and then the purchase fee if you decide to cancel your rental agreement at the end of it and buy online. If they are dense, you might need to spell it out to them. They make a mint off of these machines and if they have a brain they want to keep you as a customer.

Now some of these folks must be dense because I have heard of people having trouble getting machines they want/need even with a scrip from their doc.

My point is, the little money they will eat if they switch you to a different model is nothing compared to what they will lose if you end your relationship at the end of the rental period or before its over. You may have to spell that out to them, and remind them who is paying whome.

I was told to go to my doc to get a scrip to get what I needed and I made the appt to do so, but ended up not needing to, because I got what I needed by being informed and up front. Maybe that will help you too.

jen

[geoDoug]

I was told to go to my doc to get a scrip to get what I needed and I made the appt to do so, but ended up not needing to, because I got what I needed by being informed and up front. Maybe that will help you too.

I did the research after that initial appointment. So originally got set up with a Remstar Plus. Then I did my homework and decided I wanted an M Series Pro. I called Apria to tell them this. Their reply was the same: "Get a prescription from your doctor for it." So I called the Dr. and got an Rx for that exact machine.

As far as the not-so-subtle message is concerned, I'm in the process of putting my foot down with the RT at Apria. I couldn't for the life of me get out of Aetna or Apria how often Aetna would reimburse for supplies. (Aetna: "wear and tear." Apria: anything from "Can't tell you" to "every six months" depending on the phase of the moon when I ask.) So I did a whole bunch of research and found a page on Aetna's web site that says they follow medicare's DMERC allowances and also a document on Respironics's web site outlining the medicare allowances. I printed both those out then put nice typed cover letter on it that said, essentially, "last time we talked you didn't have a clue--well here ya go YOU MORON." But in the nicest possible way, of course.

I'm reasonably sure that he'll think I'm insulting his intelligence. And ya know what? I don't care. As I see it, if I get any pushback, I'll go somewhere else.

If nothing else, all of this is an exercise in letting him know who he's dealing with.

Doug.