Newand confused, even though I've read the newbie info

[sleepysouth]

I have been using my CPAP machine for about 2 weeks now. I think my sleep is getting better, and this is invaluable to me, especially since I have lupus causing severe fatigue on top of everything else.

I'm still a little confused about the diagnosis in my case, though. My AHI is way under 5. The problems my doctor said I had were in oxygenation levels (which increased almost 10 percent once I had a CPAP), and diificulty getting to REM sleep. It takes me about twice the normal amount of time to achieve this; probably has to do with CNS damage from my lupus, of which there is a fair bit. My partner says I don't snore--that I occasionally "breathe quite audibly," but that's it--and according to him I still do that with the CPAP. I had something like 100 arousals in my first sleep study, but no awakenings, and just one hyponea.

Does all this sound like sleep apnea to you? I feel better with the machine, and I am paying for it out of my own pocket (insurance won't pay for an AHI under 5). I'm just suprised that my doctor would see the need to give me a machine if he knew (and he did) that insurance wouldn't cover it. It could be this is central apnea--which is splitting hairs, I know. I am going to see my sleep doc tomorrow and try to get some explanations.

I did read the info for newbies on this board, but much of it just made me feel like I fit even less. I am really confused.

[Slinky]

The first question I would ask my sleep doctor would be about your oxygen saturation levels which your doctor said you had. Do have daytime problems w/being short of breath?

The second thing I would ASK your sleep doctor would be for a copy of 1] his dictated results from both your sleep evaluation study and your titration study (1-2 pages each - unless it was a split night study) AND a copy of the full scored data summary report w/condensed graphs (5+ pages each - from both studies or the split night study if that was what you had) AS WELL AS a copy of your equipment order (script). They are part of your medical records and therefore you have a LEGAL RIGHT to these copies under HIPAA (assuming you are in the USA). iF your sleep doctor will go over those full scored data summary reports w/condensed graphs so much the better - if not - there are those on this forum that can help you understand them.

What brand and model xPAP do you have? How long have you had it? These are two IMPORTANT questions you need to answer for us to offer much more information or assistance. If your xPAP is NOT fully data capable then it MIGHT be possible to exchange it for a fully data capable xPAP depending on how long you've had it and where you bought it. The first 30 days are CRITICAL for this.

[jnk]

I second everything Slinky just said. (I always do. I hope that doesn't irritate her. ) Those questions and suggestions of hers get right to the important courses of action needed.

As for your question about fitting in, don't worry, you do. There are conditions, such as UARS, that mean that you may benefit greatly from using PAP therapy even if you have an AHI below 5. That 5-AHI line in the sand is partly a diagnostic tool, but it seems to be even more an insurance tool used to decide who gets their machine paid for. If you are sleeping better, that is proof enough you benefit. Sleeping the BEST you can, though, will, as Slinky points out, require that you have as much info as possible about YOUR condition AND a machine that gives you efficacy data.

If you are paying out of pocket, be sure to check prices at CPAP.com, the hosts of this forum.

[Slinky]

Gads, jnk!!! You and I sound like a "mutual admiration society"!!!! You are much more level-headed and diplomatic than I could ever hope to be.

[jnk]

Gads, jnk!!! You and I sound like a "mutual admiration society"!!!! You are much more level-headed and diplomatic than I could ever hope to be.

Thanks, Slinky. My friends call it "wishy-washy" and "spineless." And you are much more practical and motivating than I could ever hope to be. So just let me know when I get on your nerves--I require that kind of honesty from all my friends.

[Slinky]

Hasn't happened. And I don't anticipate that it ever will.

[sleepysouth]

I use a Respironics REMStar M Series machine and heated humidifier, and a FlexiFit431 mask (full face) from Fisher and Paykel. My DME brought these to my doorstep on August 18. This was in spite of the fact that my doctor has a selection of masks and machines in his office. My insurance company dictated that I had to use this DME. They gave me this machine without offering any alternates, although I am sure I could get a different machine or mask if I had a problem with either (probably with my doctor's help.) I have a rent to own deal with my DME. The only thing they did ask me was, "Nasal or full face mask?" Luckily, I had done enough research to know that I would need a full face mask from the get-go, as a habitual mouthbreather. However, they didn't give me a choice in the brand of my mask either--just the type.

I have actually read a two page report from my first sleep study, and had the high points explained to me by my doctor. He was concerened about both the REM sleep and the oxygenation issues, but moreso about the oxygenation as he thought that was something he could fix. My low oxygenation number after the first study was 83%. The morning after my second study, I asked the technician what my lowest oxygenation with the machine was: 92%. (This may not be exact, but it's about what I remember.)

I know, because the DME explained it, that my machine has so-called "smart card" technology, and have confirmed with my doctor that it is a kind of card/machine they can download from. I am supposed to bring the whole machine to my appointment tomorrow.

Does all this help you help me?

[jules]

what is the exact name of your machine and what is the model number - you have the DS100 listed - no card in it - not all machines with cards have real data -

[sleepysouth]

It says it's a "M Series-Heated Humidifier-Dorn", Model # 1051158

[jules]

that is the humidifier - the cpap machine - what does it say on the top - and what model number will be x00 probably on the bottom -

[sleepysouth]

The top of the machine says "REMStar M Series" and the closest thing I can find to a model number is something on the bottom, right under the Respironics addresses--IPX1? It also says 4.16 A. (?) (I apologize for my incredible ineptitude here. I've already tried to ask the DME, but of course it isn't open today. Neither is Respironics, of course.)

[jules]

is there anything else on the top of the machine? like the word basic or plus or pro

how many buttons? 2 or 3 -

is there a smart card in it?

lets change the subject slightly -

you said insurance won't pay for the machine I believe yet insurance said you had to use this DME?

you said your O2 sats dropped and that the doc said they will see how you are doing with this?

if your O2 sats dropped, the only way they can tell if this is working is by how you are feeling and by running overnight pulseox - the CPAP machine data (assuming there is any - that is why we need the model number) isn't going to tell if the Oxygen levels are good at night -

what kind of doc is the sleep doc? what are his credentials?

what DME did the insurance send you to? Apria?

are you in an HMO?

what are your rental payments? how many months and how much money each month?

okay - I will lay off the questions for a few minutes ----

[sleepysouth]

I have discovered from talking to you in chat that what I have is apparently a REMStar basic. Even though you said this means there is no smart card in the thing, my DME (Duramed) said that there was one. It's got two buttons on the front and nothing else.

My sleep doc (whom I believe is cerified in polysonography but I am not certain just what he is certified in) said insurance would not be likely to pay for my machine with an AHI under 5. (Which I have.) He was under the impression that I would have to buy from him, which I could do on a payment plan. He quoted me a monthly figure I could manage, and I was fine with that. When the time came to buy equipment, I called the sleep foundation where my doc is and they told me that my insurance (which is an MA organization with a Medicare contract, whatever that means) would only allow me to get my equipment from Duramed. Duramed then showed up on my doorstep and delivered the gear. I paid them about $27.50 the first month and will be paying closer to $20 for the other 12. I don't understand how Medicare works well enough to tell you if I am in an HMO or not. (I'm on Medicare through disability.)

My sleep doc may want to do Pulseox (which I sort of understand after our time in the chat room). I don't know. I hope he will enlighten me when I come to see him tomorrow--particularly now because I intend to ask. I haven't even seen the second sleep study report, and don't know what my specific diagnosis is. (Though I am pretty sure it isn't OSA.)

[Slinky]

YOU have ME totally confused! You said your insurance wouldn't pay for your CPAP since your AHI was under 5. It would have been soooooo much easier had we known Medicare was your primary insurance. *sigh* Most all local DME suppliers accept Medicare. Medicare pays 80% of the allowed amount. Your copay is the other 20%

IF you've had this Respironics device less than or only a few days more than 30 days - TAKE IT BACK! RETURN IT! INSIST they provide you with a Respironics M Series Pro w/C-Flex or you will buy your Pro online for $459.00 and still use the integrated humidifier that came w/that DS 100 they pawned off on you. OR you can purchase BOTH the Respironics M Series Pro w/C-Flex AND the integrated humidifier online for $589.00 AND that will come WITH the data card, hose and filters and the Pro IS FULLY DATA CAPABLE. Tell them you can buy that bare bone DS 100 they pawned off on you for $189 online brand new outta the box AND the hose and filters w/come w/it at no extra charge.

Have you been Dx'd w/UARS and this DS 100 CPAP is just to prove you've failed CPAP and need a more advanced xPAP? IF that is the reasoning or theory for your having to pay outta pocket for this DS 100 HOW do they intend to PROVE you have "failed" CPAP therapy when it can't provide any data except compliance? If you are compliant and doing good w/it YOU ARE STUCK WITH IT!