How does a Dr. track therapy with no patient data?

Fischdream,

About having no choice about your machine, while that is the impression often given to patients, it is usually not the whole truth. There may be a time when a large contract between an insurance and a provider specifies a particular model of machine unless otherwise ordered by the doctor, but usually it is by delivery type, not model. If the prescription specified a bare bones model, then the issue is with the doc. If the prescription generically said CPAP, then it was the DME who decided which CPAP they want you to get. If a bare bones machine is not acceptable to you, find out if the kink is at the doctor or DME level.

Getting the DME to provide an APAP without a revised doctor's order would likely be a battle (rightly so or not). Getting a CPAP that is data capable should be between you and the DME. No need to complicate the matter by involving the doctor at this level. Since you haven't even had your machine a month, if it's what you want, an immediate visit to the DME with machine in hand would likely get you another machine. If you have found the prescription just said CPAP, simply tell them you want a data capable CPAP. You will have read enough here to know how to respond to whatever they say. There is a big difference between them being unable to supply what you want and it just not being their usual procedure and maybe not being a stock item.

Some choose to battle for an APAP. Nothing wrong with having every option available "just in case" or if the titration was not very successful, but usually is not a necessity. Everyone has to decide for themself how far they want to take this (if anywhere). Or they can get their prescription and order their machine of choice online.

Let us know how this pans out for you.

Kathy

P.S. As I posted this I saw much was already covered in a recent prior post, so just consider this a vote of support.

Thanks for the response Dreamon and Kathy! And thank you for the encouragement! I know my post was pretty whiney, but I needed to vent a little of my frustrations! I posted my crocheted hose cover and my equipment setup on the thread you suggested dreamon.

To give a little more detail about how I got the equipment I have: My PCP ordered the sleep study. There is a sleep center in our hometown that did the study and they sold me the equipment. I was totally naive, not knowing anything about the equipment or what would be best. They only sell respironics, and only have the comfortgel full face, comfortgel nasal, and the comfort lite 2 nasal with either the nasal pillows, or the one that covers the nose. The mask I'm using now is the comfortlite 2 with the nose covering mask. I clean my face before using the mask and only wash in palmolive dish soap in warm water. I'm not sure if they have different machines or not, but I plan on asking next week. I am also asking for a copy of my prescriptions so I can order from the internet. I do want a machine that I can get data and know how I am doing. I do feel better, but if I could sleep longer with the cpap it would help with a lot of frustrations!

thanks again!

fischdream wrote:Thanks for the response Dreamon and Kathy! And thank you for the encouragement! I know my post was pretty whiney, but I needed to vent a little of my frustrations! I posted my crocheted hose cover and my equipment setup on the thread you suggested dreamon.

To give a little more detail about how I got the equipment I have: My PCP ordered the sleep study. There is a sleep center in our hometown that did the study and they sold me the equipment. I was totally naive, not knowing anything about the equipment or what would be best. They only sell respironics, and only have the comfortgel full face, comfortgel nasal, and the comfort lite 2 nasal with either the nasal pillows, or the one that covers the nose. The mask I'm using now is the comfortlite 2 with the nose covering mask. I clean my face before using the mask and only wash in palmolive dish soap in warm water. I'm not sure if they have different machines or not, but I plan on asking next week. I am also asking for a copy of my prescriptions so I can order from the internet. I do want a machine that I can get data and know how I am doing. I do feel better, but if I could sleep longer with the cpap it would help with a lot of frustrations!

thanks again!

Hi Fischdream,

Kathy had some great suggestions. I'll go check out your crocheted hose cover.

You really should insist that they give you a machine that will work for you. Since they carry Respironics, they should be able to get you a Respironics Pro (not Plus!), which has exhalation relief and records useful therapy data. If they balk, tell them you will be taking your business elsewhere -- now and for all future supplies and services. That may get their attention. You should get your Rx and copies of your sleep studies anyway. Then shop around at other local DME suppliers that are in your insurance network to find out if any will provide you with the specific machine you want. If that doesn't work, then you could go the internet route. I know that this forum's sponsor, https://www.cpap.com only requires that the prescription specify "CPAP" (more info here: https://www.cpap.com/cpap-faq/Prescript ... l#FGID-130), and with that you can get either a regular CPAP or one that is auto-adjusting (APAP). APAP machines can be run in CPAP mode, so they are the most versatile. I have a regular CPAP machine (with full data capability) and it works great for me. But with local DMEs I don't think you can get an APAP unless the Rx specifically says that.

I know that one of the regular contributors to this forum, KatieW, has used the ComfortLite, both nasal pillows and the Simple Cushion that you're now using. She said that the cushion tended to leak for her too, but I think she's happy with the pillows. The pillows you have may not be the right size for you, and having a machine with exhalation relief may help too. It can take some trial and error to find the right mask. The sleep center should be helping you with fitting and mask instruction!

I'm glad that you are feeling better. I agree that if you can get more hours of quality sleep, things will improve even more! Let us know how it goes.

~ DreamOn

Any DME should have the ability to provide different levels of machines, they may just have to order it. They provide a paid service to meet your needs, so don't allow yourself to feel you are asking them for a favor. You are not asking them to give you special treatment, just adequate treatment.

If after having purchased any other electronic equipment I became aware that I had been given a less desirable model than another one my same money could have bought, I'd be one unhappy camper if I had been told the one I'd been given was my only option. With cpaps it's usually more an ommission rather than a lie, as most new users don't even know to ask, and the provider has met the prescription requirements. (Don't ask-Don't tell?) But the fact remains that we could have gotten more for our money, and in no other arena would most of us find that acceptable if we could meet the criteria of their return policy. Touchy stuff, but we are in an evolving environment where this is going to be more and more of an issue. It's up to the providers and their suppliers and reimbursers to work out their issues. I just want what provides my best opportunity for successful treatment. Shouldn't that be what they too want for me? Ok, went too far there!

Best wishes in your successful treatment.

Kathy

What is amazing is she paid a $150 copay that was 20% of the cost of that machine that sells on CPAP.com for $220. That means the total price of that machine was billed at $750. Wow!

Sleeprider wrote:What is amazing is she paid a $150 copay that was 20% of the cost of that machine that sells on CPAP.com for $220. That means the total price of that machine was billed at $750. Wow!

It is amazing, isn't it -- quite a profit there!!!

For comparison, you can buy a fully data capable ResMed S8 Elite II, which I have, for $438 at https://www.cpap.com/cpap-machine/resme ... chine.html. I purchased my machine through my sleep center/DME. My insurance allowed $842.08 for the machine and I paid 20% of that allowable amount -- $168.42.

The insurance companies are getting ripped off, and it trickles down to us. No wonder we're in such a mess with our healthcare system!

~ DreamOn

Car analogy.

Ok, sometimes it is a good idea to ask questions without giving the data. If you never ask you will never learn. If you never learn how do you expect your treatment to be successful? Ask the questions about how you feel and what you see on that screen on your machine, ask about the data you have downloaded.

Gerry

Just a word of caution on data... Unless there was an occurence during a night I want to investigate, I quit looking at my data in the mornings. I was concerned it could influence my expectations of how good a day I would have (or not). Besides, it was more interesting to me to journal how I felt for several days, then pull the data and see if there was any correlation between my numbers and feelings. I realize that would present a problem for those getting the numbers off the screen as opposed to downloading data. Just saying, don't let your data make or break your day. If you ever hear yourself describing your day in the terms of your AHI, you might want to change your data collection time.

You know you have a problem if:
#1 Your AHI is up a point, so you cancel your lunch plans because you just know you're going to need a nap.
#2 After seeing your first AHI of 0.0 you get online and pay a non refundable entry fee to run a half marathon.
#3 Your leak rate is up a point again so you order yet another mask and pay for overnight delivery.
#4 A mediocre AHI always precedes a mediocre day.
#5 Two 0.0 AHI nights in a row and you question if you really still have OSA.
#6 An AHI over 5 sends you to the doctor for reassurance you aren't at death's door.
#7 Three 0.0 AHI nights in a week and you return your machine as malfunctioning.
#8 Your computer crashes at 1am and you rush to a 24hr Walmart to replace it because it's a medical necessity.
#9 You feel fine when you get up until you check your numbers.
#10 You oversleep and have to run out without checking your numbers so you get a headache "just in case".

Ok, that's all I've got. Just thought it would be fun to take a look at the opposite extreme from not having data. Before you ask, no, I'm not confessing how many of those are from personal experience!

Kathy
who thinks non data machines should be obsolete

kteague wrote:Just a word of caution on data... Just saying, don't let your data make or break your day. If you ever hear yourself describing your day in the terms of your AHI, you might want to change your data collection time.

Excellent point, Kathy. And for those whose machines only show averages on the screen it's even more true. I record my averages (just anal, I guess) but a shift up or down often, even usually, doesn't reflect the most recent night. It can easily be a very good or a very bad AHI or leak night from a week ago rolling off the average.

I am most grateful for the software.

Slinky wrote:

Vallan wrote:How has it come about that you are getting the S8 Autoset Vantage or S8 AutoSet II? At your insistence or on order of your sleep doctor? Is this the same sleep doctor that let you be provided w/the Escape? Is the AutoSet to be your new permanent xPAP or is this just a loaner?

Oh they tried to tell me I was getting the machine my doctor ordered (S8 Escape). I told the RT I wasn't taking that machine and I wanted the autoset II. Had to get my doc to re-write my script, but it was worth the bit of fighting. Now lets see if what I requested shows up or we have round 3.

GOOD LUCK! We're rooting for you here in the forum to get what you want. Let us know.

kteague wrote: #9 You feel fine when you get up until you check your numbers.

Been there. done that. Got a good chuckle. Thanks Kathy.