New Diagnosis/DME Fight & Looking For Advice

[lowsats]

Good Day Friends! Sorry in advance for the long post, but Im in need of some help.

I have long been a lurker on this forum reading up and getting educated since beginning my journey to an OSA diagnosis about three months ago. I was a paramedic for a long time and always attributed my extreme fatigue and DTS to shift work. Years ago my doctor tried to get me to do a sleep test but I (stupidly) refused. Now things in my life are a bit more stable and I have recently completed all the testing and was diagnosed with OSA with an AHI of 27, frequent desats to 77% and massive amounts of snoring.

After doing my homework on machines and this forum (as instructed by my doctor) I began telling everyone who would listen that I wanted the Airsense 10 Autoset, even if it was only to be used in CPAP only mode. No one listened. My script was written for 9cm H20 with "Resmed Airsense 10" only. I asked several times for them to specify the autoset, but they did not. Here's where the story gets interesting.

The DME was able to verify that the doctor was cool with me getting the autoset machine, but when I went in for my setup appointment I was told "it will be another week until we can get that machine in (remember this)." The RT told me that the CPAP model offered exactly the same features, sans the autoset functionality, and since I didnt do much homework on the CPAP model, I agreed to proceed with setup.

Red flag #1: On my script, it says Swift FX as this is the mask I used in the titration study and loved it. Im not picky honestly and have NO trouble tolerating the pressure, mask, dealing with the tube, anything. I always volunteered to be a guinea pig at work and as such have been poked and prodded more than I care to disclose. When I was getting setup the RT pulled a F&P Pilairo Q mask out and insisted that was the one I would want. No biggie, it was nice and comfy. But alas, that mask is much cheaper than the Swift FX.

We finish setup of the machine and I take it home, slept like a baby last night, AHI showed 0.2 this morning and I feel great. But now I go to import my data into sleepyhead and its a no go. The data I was promised is not recorded by this model. How disappointing.

I immediately called them this morning and spoke again with the RT. Here come more red flags: After trying to convince me that I dont need that data and there is no use for it, she then says my insurance wont cover the APAP model (LIE! Im well aware of E0601), she then says they never order that model for their patients (remember what I said earlier about how they could have it in a week initially?) as the "doctors are ONLY concerned with the AHI and nothing else." I smell some BS here.

I dont believe any of it. What do you guys think? Im in the process of waiting for a call back from the DME manager to "deal with this" as she put it (very rudely I might add).

Thank all of you for sharing what you have, you have made this all possible for a little newb like me. Hopefully I can be of help moving forward for anyone else facing these same struggles.

[Julie]

If your doctor writes a script for an autopap, the one you tell him you want (that you know isn't a brick but gives data) the DME has to fill it...

[Pugsy]

Call your insurance company and find out if there is another DME in your area that you can use.
Then call that DME and explain what you want...and would they provide it? I am betting they will.
Call up the first DME and tell them they didn't give you what you wanted and you are returning it and going to go to someone else that will....they will likely back peddle or tell you more lies.
Personally...when someone lies to me I don't want them to have my business even if they back peddle...but that's up to you.

The Pilairo is a nice mask but the Swift FX is superior IMHO...I have used both...tried the Pilairo but went back to the Swift FX (what I was using at the time). Get the mask that YOU want...that way you won't be what iffing....what if I did better with what I wanted in the first place.
The only advantage the Plairo Q might have over the Swift FX is the vent diffuser...it does help with vent noise but as you already know, since you already used the Swift FX, the vent noise on the Swift FX isn't all that loud anyway.

Sounds like they gave you the base model which offers basic AHI but nothing in the terms of details...get what you want so that you won't spend more time "what iffing".
The reason they gave you that machine.....they make more money on it because as you know your insurance pays the same no matter what cpap/apap model you get.

[lowsats]

My thoughts exactly. I never saw the "updated" script. I have called the doctors office as well as another doctor in that office personally. And he confirmed that the extra data as far as specific type of events etc would be enormously helpful. He also confirmed that he almost always rx's autoset machines, as having a range of pressures is almost always better.

[lowsats]

Exactly Pugsy, and when I called them on that, thats when they got nasty.

Im happy to say that I verified that the doctor did indeed approve my script for APAP, the office sent the script to the DME and they are now ordering me the Airsense 10 Autoset, like I wanted from the start and all along.

I dont know why we have to fight so hard to get what we want/need as patients.

[Pugsy]

Get a copy of the script (you need it anyway to have on hand) and if it does indeed specify the apap model...scream bloody murder at the DME because what they did was illegal and that opens a whole new can of worms. If they gave you something that was contrary to what was written on the script that is very bad for them.....they didn't fill the RX and they substituted on their own and that's not legal.
Now if the script just says something generic about cpap and AHI...what they did might be legal...it all depends on the wording on the script.

Get a copy of the RX for your personal records...you will need it if you ever want to buy online anyway or from another DME.

Edit....I see you have already forced their hand and they are getting you a different machine.
Up to you but I would still investigate another DME for masks and other accessory purchases...you don't have to use them for future masks just because you got the machine from them. I wouldn't be wanting them to have any more of my money (or my insurance money) than I just had to ...but that's me...I am a bit stubborn and spiteful. Screw me once...shame on me but screw me twice then it's shame on you and I do get even...one way or the other.

[lowsats]

I will most definitely be obtaining the script. I love having everything like that on hand, not only for travel or emergencies, but just for my own records. I worked in healthcare long enough to see how easily things like that get mixed up.

Pugsy I have read what feels like a million of your posts, since you seem to be the forefront of knowledge in this regard, was I correct in my assertation that the Airsense CPAP model will only show AHI and leak, not any detailed data, nor will it work with sleepyhead?

I will definitely investigate another DME, although this one came highly recommended by some friends of mine and by the doctors office. Now that they are willing to work with me to get the machine I want/need, my opinion of them could be swayed to a positive one. That said, all my life I have always said "Ill forgive, but I'll NEVER forget."

[Sir NoddinOff]

Hi lowsats,
Wow, it's good you found CPAPtalk. I always get a little gnawing in the pit of my stomach when I hear stories like this. Get a new DME, like Pugsy suggests.

[Janknitz]

I dont know why we have to fight so hard to get what we want/need as patients.

You answered your own question here:

But alas, that mask is much cheaper than the Swift FX.

It's all about the money. It's not about you, your health, your engagement in your treatment, your concerns. Just dollars.

You are cutting into their profit margin. They will be as happy to see you go as you are to put them in your rearview mirror.

[Pugsy]

was I correct in my assertation that the Airsense CPAP model will only show AHI and leak, not any detailed data, nor will it work with sleepyhead?

That's what I have understood but I have yet to see any data from the CPAP model to see what it actually shows and how it presents it. I suspect that all you get is a generic AHI (no category breakdown) and I don't know what leak number they are reporting but it's probably a 95 % number since ResMed likes to report that number on the LCD screen. While not totally a brick......since it does give generic AHI and some sort of leak number...I call it a half assed brick.

As to whether it will work with SH or not....I don't know because in the past when ResMed had their half assed brick that SH wouldn't work with it was because of the file structure where the data was held..SleepyHead didn't know where to look but ResScan did.
If you want to use ResScan until you get your new machine and see what it does report...I would be happy to help you get it. Windows only though no Mac version...just send me a private message.
If you are willing...I would like confirmation of just what the half assed does show...if it shows anything beyond some numbers..that sort of thing.
If SH doesn't/can't show anything at all it could just be a compatibility issue due to a different file structure but ResScan will show it and any detailed graphs if they are available.

[lowsats]

Sir Noddin: exactly, I couldnt be more thankful for this forum and all the wonderful people on it.

On that note, a special thanks to you Janknitz, those links in your signature are what armed me for this fight with the DME. Without that information, it makes me wonder how many patients out there just get taken for a ride by their own healthcare and don't really get the proper treatment or management they need. I also wonder how many more people could in fact tolerate xPAP therapy with a better machine/more comfortable mask, etc. That's one aspect of being a paramedic I always loved, we got to provide the best treatment and do everything possible for every patient, without being too concerned over dollars and cents.

[lowsats]

Pugsy, I would be happy to confirm this half-assedness and will definitely be looking into it. I will send you a PM shortly

[Pugsy]

Good...we now have a guinea pig with a half assed brick and ResScan to see what this model machine actually shows.
Past half assed bricks (the S9 Escape Auto) didn't show leaks at all which I always thought was really stupid because if leaks aren't well managed it doesn't matter how good the generic AHI that the S9 Escape Auto showed was.

[Ladyflower]

Thankfully when I set my mind to something I prepare, prepare, and prepare some more. After reading the horror stories on here and speaking privately with some very knowledgeable people here, I knew exactly what I wanted. Because I had to get an ASV, which is a very expensive machine, I knew exactly what I wanted and wasn't going to let them talk me out of it. I spoke on the phone and emailed one of the people from the DME for weeks with questions on exactly how much my insurance would cover, exactly the model machine I wanted, and the exact mask I wanted. Of course they tried giving me the older model machine, because that's what they had in stock - I was finally told I would have to pay my deductible up front for them to order the new model (fine, whatever.) I asked for a specific nasal pillow mask and was told I would have to use a full face mask with my pressure - I went to my family doctor and had her write me a script for "ANY" CPAP mask of my choosing. I waited and didn't take possession of my machine and gear until they had everything I wanted there for me to pick up. The only time I have went back to that DME was when I had to submit my compliance data that first month for the insurance. They have never bothered to call me to ask if I needed any supplies ordered. Since I had a co-pay and it would have cost more to go through my insurance anyway I just ordered filters and replacement mask parts from Ebay. I don't plan on dealing with another DME until my machine dies and I have no choice.

[poppi2]

.... After doing my homework on machines and this forum (as instructed by my doctor) ....

Did your doc tell you about this forum, or to do your homework? Either way, it sounds like you have a good sleep doc. Good luck, Earl