Newbie waiting for Rx for my equipment

[carolaz]

Hi everyone,
This is my first post, but I've been reading this forum a lot for the past few days. I've had two sleep studies done. The first one diagnosed me as having moderate sleep apnea, 21 AHI. Last Thursday night, I went in to get titrated. I tried the nasal pillow first, and in the lowest setting, it was very uncomfortable for me. I could last only 15 minutes with it on. I then tried a nasal mask and did much, much better, still I felt like I didn't get much sleep at all.

The sleep tech assured me that while I was there, she tried me on different pressures and has the data to show the doctor, who will then decide what pressure I should be at. When I get that, someone is going to deliver my machine and set it up for me. The sleep tech implied that they are going to lock my pressure (i.e., I will not be able to change it myself). Since then, I've been reading here that people are able to change their pressures, and now I'm confused.

It sounds like they'll be giving me a Respironics machine, but I don't know what model it will be. I feel like I'm pretty much at their mercy as I don't know how the whole "system" works. It sounds as though some people get a prescription for the machine and mask and they can get their equipment any place, but it doesn't seem to be the case with me.

I guess I'm in that weird time between the titration and getting my prescription, and I don't know what to expect. Is there something I should be asking for if I have a chance?

Thanks for such a great forum!

[jweeks]

Hi everyone,
The sleep tech implied that they are going to lock my pressure (i.e., I will not be able to change it myself). Since then, I've been reading here that people are able to change their pressures, and now I'm confused.

Carol,

Welcome to the forum, and congrats on getting diagnosed. I remember that odd time between the study and getting my machine. I was kind of going nuts realizing how bad off I was, and not being able to get my machine for almost a week. Try to find out exactly what machine you are getting. We want to make sure that you get a data-capable machine so you can monitor your treatment.

The pressure thing -- yes, the DME (sleep tech) will set up the machine to match the doctor's prescription. No, that isn't adjustable from the normal user controls. Yes, the clinical manuals are available in the wild, and that will give you the info you need to make those kinds of adjustments. Some say doing that is illegal since it is medical equipment, others say it is your treatment so you can do what you want. That is your decision. I made adjustments on my machine based on suggestions from this forum.

BTW, good luck flying solo on the machine your first night. Please do post back on how it goes, and please fill in the equipment type in your profile once you know what you have.

-john-

[drj130]

Greeting Carolaz, welcome to the wonderful life of being a hose head.

With that said, lets get to answering your questions.

1: Fist and foremost, tell them you want a Full Data Capable machine. The difference between the two is simple, a Full Data machine will provide all the data you need to help you take control of your treatment and help you spot possible problems. A compliance only machine only provides days and hours used.

With getting out equipment, mostly it deals with who your insurance is, and who they want you to go through, Once you have your prescription, if you want, you can buy your own machine out of pocket, from where you want to get it from. You can also talk to your insurance company and see if they will reimburse you for doing that.
For changing your pressure, that is always possible, just have to know what machine you will have, and I'm sure someone will be able to get you moving in the right direction.

I'll let the others take over because they have been at this a little longer than me.

Again welcome and good luck.

David

[cflame1]

For Respironics machines... you'll want a Pro, an Auto, or a Bi-PAP (that doesn't have the word PLUS in the name) in order to get a Fully Data Capable machine.

[bdp522]

Welcome to the forum! Ask for and fight for a data capable machine. The data is how you tell if this is working for you. Don't worry about the DME locking you out of anything, we can tell you how to get the info once you know which machine you're getting. Some insurances work with just one DME vendor, others allow you to go to approved DMEs and yet others allow you to go where ever you like. Do let us know what machine you end up with, and what mask. You can enter them into your profile once you get them. This will help us give you better answers to any questions you may have.

Brenda

[Sleepy Taz]

Carolaz,

Welcome to the world of hoseheads, you are about to begin a journey towards getting your life back. In the time that you are waiting for your Cpap I suggest that you look at the top of the webpage and click on the new user’s icon where you will find a lot of the information that you are looking for. Then go to the “our wisdom” icon where there is a plethora of information from experienced Cpap users that will help you get started. Once you have your equipment sue this forum for any questions and advise especially if you hit any roadblocks on the way. There are a lot of well knowledge and caring people here that love to give help and support so come back often even if you only want to mingle. Good luck

[Wulfman]

Hi everyone,
This is my first post, but I've been reading this forum a lot for the past few days. I've had two sleep studies done. The first one diagnosed me as having moderate sleep apnea, 21 AHI. Last Thursday night, I went in to get titrated. I tried the nasal pillow first, and in the lowest setting, it was very uncomfortable for me. I could last only 15 minutes with it on. I then tried a nasal mask and did much, much better, still I felt like I didn't get much sleep at all.

The sleep tech assured me that while I was there, she tried me on different pressures and has the data to show the doctor, who will then decide what pressure I should be at. When I get that, someone is going to deliver my machine and set it up for me. The sleep tech implied that they are going to lock my pressure (i.e., I will not be able to change it myself). Since then, I've been reading here that people are able to change their pressures, and now I'm confused.

It sounds like they'll be giving me a Respironics machine, but I don't know what model it will be. I feel like I'm pretty much at their mercy as I don't know how the whole "system" works. It sounds as though some people get a prescription for the machine and mask and they can get their equipment any place, but it doesn't seem to be the case with me.

I guess I'm in that weird time between the titration and getting my prescription, and I don't know what to expect. Is there something I should be asking for if I have a chance?

Thanks for such a great forum!

Now is the time for you to get into the "driver's seat" of YOUR therapy. If you don't, they may try to give you a bare-bones machine that doesn't have data-capabilities. Listen to what the previous posters have suggested. Make sure you get your hands on your prescription (and a copy of your sleep study) and don't let them shuffle you off to some DME of their choice.

Welcome to the forum.


Den

[Slinky]

Okay. Now is NOT the time to be a "patient" patient!

1] Call your insurance company.
Ask the what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one as that gives you more bargaining/negotiating room to get the equipment you want.
You might as well also ask them what your annual deductable, if any, is, and if you have an annual deductable what the fiscal year is.
Ask what copay if any is yours
Ask whether they rent the CPAP outright or if there is a rental period. If there is a rental period ask how long that rental period is. (Most always it is a "capped rental" i.e. rent-to-own, so you get a NEW CPAP which then becomes yours at the end of the rental period, NOT rent a used unit for x amount of time and then be provided w/a brand new one
Ask what percentage they will pay if you go "out of network".
Ask if you would be considered "in network" if you purchased out of pocket and submitted a bill for the equipment, a paid invoice as proof of your payment including proper insurance codes
Ask what brands and models of CPAP they will pay for (most will tell you they pay for what the local DME supplier provides)

2] Ask your sleep lab/sleep doctor for
A copy of the sleep doctor's dictated results (1-2 pages each)
A copy of the full scored data summary report w/condensed graphs (5+ pages each)
from both your in-lab sleep evaluation study AND your CPAP titration study PLUS
Your equipment order (prescription)

The above are part of your medical records and as such assuming you are in the USA you have a LEGAL RIGHT to them under HIPAA.

3] Visit each of the local DME suppliers contracted w/your insurance.
Ask them what brand and model CPAP they prefer to provide
Ask them what their mask exchange policy is
Tell them you will NOT ACCEPT anything less than a FULLY DATA CAPABLE CPAP and ask them which one they would prefer to provide.
See how comfortable you feel w/their RRT, how truthful and knowledgeable their RRT appears to be, and if you even get to work w/their RRT or if you are shuttled off to some other staff employee who works "under the RRT's supervison" (yeah, uh huh)

4] ALWAYS keep in mind
YOU are the one paying for these services (sleep lab, sleep doctor and DME supplier) and equipment (DME supplier), whether out of pocket or thru insurance is immaterial, YOU are still the one paying whether directly or thru less salary or wages.
It is YOUR health, it is YOUR therapy.
NEVER part w/your script. Provide them w/a COPY of your script. NEVER part w/your sleep studies' downloaded printouts, provide ONLY copies as needed.
Just because the CPAP they offer or provide you w/has a data card does NOT mean it is fully data capable, therefore it behooves you to determine NOW just which brands and models are fully data capable and which aren't.

Good luck.

[BleepingBeauty]

Hi, carol, and welcome to the forum from another Aridzonan.

You've gotten great advice so far, and I'm here to put an exclamation point on getting a data-capable machine from the get-go. My insurance only contracts with one DME (Durable Medical Equipment dealer), so I either have to get my equipment and supplies from them or I have to pay for everything out-of-pocket. My insurance won't let me buy elsewhere (i.e., online) and get reimbursed, so I deal with the DME out of necessity.

When I began therapy almost two years ago, I knew nothing about the CPAP world. The DME gave me a Respironics PLUS machine. This is the bottom-of-the-barrel, bare-bones machine, which only gives you compliance (usage) data. Compliance data was good for the insurance company, since it proved I was using the machine they were paying for. But it gave me NO information re: how my therapy was actually going. I used the machine every night, but I was still tired every day; without access to the data, I had no idea why. (Nor did my doctor at the time.) The DME assured me that this machine was data-capable and showed me the Smart Card to "prove" it. DMEs often lie because it suits their bottom line to give you a lesser machine.

I fought with the DME to get a data-capable machine, but they dragged their feet and made excuses, and my sleep doc at the time was useless. So it never happened, and I was on therapy for about 18 months without data. I feel like those 18 months were basically wasted. Yes, I was getting therapy, but I wasn't getting effective therapy, and there's a world of difference between the two.

After I found this forum and became educated, I resolved to find myself a fully data-capable machine. I bought my current machine from a seller on CraigsList a few months ago, got the software and a card reader, and now I monitor my own therapy every night and am able to make whatever changes that I deem necessary to make my therapy as effective as possible. With the addition of a good mask, I'm getting much better therapy now than I did for the first 18 months of CPAP use.

So to reiterate, GET A FULLY DATA-CAPABLE MACHINE and give yourself the best chance for success right from the beginning. Again, welcome aboard, and best of luck.

[carolaz]

Thank you so much for all the great replies!

I just spoke to my insurance company who said they will pay for my CPAP machine with a $20 copay, any machine (but I have a yearly limit of $5000 for DME), if that is my prescription. I'm now waiting for a call back from the sleep clinic, but left a message stating that I want a fully data capable machine.

We'll see what happens next!


Carol

[BlackSpinner]

I'm now waiting for a call back from the sleep clinic, but left a message stating that I want a fully data capable machine.

Just for your information: The prescription will only say something like "CPAP at xx pressure" They never specify the exact kind of machine or whether it is data capable.

The people involved are : Sleep clinic, sleep doctor, DME, and insurance.

The sleep clinic does the testing
The sleep doctor writes the prescription
The DME fills the prescription (picks out the machine and mask and hopefully teaches you how to use it)
The insurance pays for it.

Hopefully they are all independent of each other and not sitting in each others pockets.

Rehearse "I want a fully data capable machine which means all the data not just compliance!". Please remember to add "not just compliance" some RTs will interpret "fully data capable machine." as just the hours used (compliance).

[rested gal]

Rehearse "I want a fully data capable machine which means all the data not just compliance!". Please remember to add "not just compliance" some RTs will interpret "fully data capable machine." as just the hours used (compliance).

Right. Some Respiratory Therapists and other DME (durable medical equipment) store employees do not even realize some machines provide more data than others. Hours of use is all that most (many?) of the employees ever look for or even notice on data downloads from the machines.

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated through Sept. 2009:
viewtopic.php?p=307168#p307168

DME might not understand what "Full data" is.
viewtopic.php?p=344265#p344265

[jfalek]

Rehearse "I want a fully data capable machine which means all the data not just compliance!". Please remember to add "not just compliance" some RTs will interpret "fully data capable machine." as just the hours used (compliance).

Right. Some Respiratory Therapists and other DME (durable medical equipment) store employees do not even realize some machines provide more data than others. Hours of use is all that most (many?) of the employees ever look for or even notice on data downloads from the machines.

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated through Sept. 2009:
viewtopic.php?p=307168#p307168

DME might not understand what "Full data" is.
viewtopic.php?p=344265#p344265

I have been using a ResMed Escape I for the last 5 years and just became aware of the Elite II and Escape II. I know that my DME carries the Escape II, but is there any real advantage of getting (fighting for) an Elite II? Do you know of any site (I've been trying to find) which describes the differences between those two devices?

Thank all of you for any advice and direction ahead of time,
James

[Gerald]

Carol....

Watch out for "snake-Oil" accounting and pricing.

I have first-rate equipment...all purchased by Internet.....and I probably have spent no more than $2000 for everything.....machine....masks....software....card reader..... Oximeter.....etc.

Also, I just finished a sleep-study re-test......with a total cost of about $700 for one night. It was a total failure....a waste of my time....and Medicare paid about $450 and the co-pay was about $250....yet the hospital sleep center sent a bill to Medicare for a little over $4000......a "list price" of more than 5-times what they really charged. Disgusting!

So watch 'em closely. They're busy figuring every way they can stick their beaks into your wallet.

Gerald

[Slinky]

*sigh*

Far be it from me to "defend" all local DME suppliers but:

1] The amount you see billed to your insurance is their "dream" amount. The billed amount is a far cry from the "allowed" amount they contracted w/your insurance company for. Check your EOB from your insurance company and you will see what I mean. AND your copay, if any, should be based on the "allowed/contracted" amount NOT the "billed" amount.

2] The local DME suppliers have to buy a lot of CPAP models to have on hand to supply to patients which means they have to shell out a pretty large amount of money for their in stock inventory. BUT most insurance pay via some form of capped rental agreement where in they make monthly payments for so many months until the device is paid in full and reverts to you sole ownership. The "rent to own" agreement can be anywhere from 3 to 13 months. So they shell out a big parcel of money up front and get reimbursed in dribs and drabs. The deserve SOME interest on that initial investment.

3] The manufacturers, sleep labs and sleep doctors RELY on the local DME suppliers to provide the education, support and advice you will need as you start and get acclimated to your CPAP therapy. They deserve some reimbursement for that IF they truly do provide those services. Far too many fall flat on their arse in that respect.

4] The local DME suppliers must have a Registered Respiratory Therapist on staff to provide the respiratory and sleep therapy services. Some have an RRT readily available to work w/their patients - others have "support staff" working under the "supervison" of the RRT to work w/their patients. Either way they need to pay for at least one RRT on staff.

5] The bulk of most local DME supplier's business is thru Medicare. Medicare only pays every three months, so the DME submits three months worth of bills and only get reimbursed every 3 months instead of monthly thereby stretching out the return on their investment even further.

6] The online DME suppliers get THEIR money right up front before they ever ship the equipment.

That being said:

Most of us who take part in these apnea support forums found our way here out of NECESSITY BECAUSE the local DME supplier we had the misfortune to do business with failed MISERABLY w/their "service" and/or were totally less than truthful - or knowledgeable.