FINALLY got a diagnosis of UARS and need advice about DME

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Minky
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FINALLY got a diagnosis of UARS and need advice about DME

Post by Minky » Fri Nov 21, 2014 8:08 pm

Had a sleep study in September. I was certain that I had apnea, but when I got the results from my PCP it turns out that I have no apnea whatsoever. My AHI was 1.1 due to some hypopnea. I was very disappointed because I was hoping that cpap would make me feel better. I knew there had to be an answer and found it on this forum, UARS. I sent an e-mail to my PCP telling her that I'm certain I have UARS and asked (begged) for a prescription for an APAP, mask and supplies. She didn't write the prescription, but did refer me to a sleep neurologist because I did have a lot of other issues - terrible PLMD, many arousals and significant oxygen desaturation.

I saw the sleep doctor on Wednesday. He came into the room, told me that my PCP had forwarded my e-mail, said that I was exactly right about UARS and said that my request for APAP was a very reasonable approach. Yay! The downside is that there is no way that insurance will pay for it, but not a big deal. They fitted me for a mask and sent me home with a Swift LT nasal pillow mask. A DME is going to contact me to arrange a two-week loaner and if it is working well the doctor will write the prescription so that I can buy a machine. He's going to prescribe a fully data capable machine so that he can monitor my progress.

I do have a couple of questions before seeing the DME. I looked online and there are two in my area, one that people say is great and one horrible one. Of course the hospital uses the horrible DME. Since I will be paying myself I don't have a problem with arguing for what I want, but I looked on the DME's website and they don't have the machine that I want, the Resmed S10 for Her that Pugsy recommended. Can I insist that they order the S10, or do I have to take one of the machines that they normally sell? If I can't get the S10 should I get the S9, which they have? If I want to purchase masks from cpap.com after buying the machine will I need a separate prescription to send to cpap.com?

Thanks again for all of the advice. I had no idea that UARS existed and probably would not be on my way to treatment if I hadn't found this forum.

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Julie
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by Julie » Fri Nov 21, 2014 8:32 pm

http://maskarrayed.wordpress.com/

Don't know if anything there helps or not (I'm in Canada insurance-wise) but hope it does.

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Pugsy
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by Pugsy » Fri Nov 21, 2014 8:48 pm

You need to have a copy of the RX in your hands..then you can buy from anyone you choose.
If doc wants to send the RX to the DME of your choice ...let him do it but make sure you have a copy yourself.
It's not an unreasonable request because the RX is part of your medical records which you are entitled to have access to and copies of those records.
On that cpap RX there should also be the words "mask of patient's choice"...though I think that a cpap machine RX will be sufficient to satisfy mask RX requirements. You might call cpap.com to find out for sure though.
But most of the time cpap RXs are worded something like this
CPAP machine with heated humidifier and mask of patient's choice.
Some will go into more detail and it's helpful if the doc states exactly which brand and model machine so that the DMEs can't substitute a cheaper machine and still fill the RX requirements.
So in your situation...RX should state
ResMed Air Sense 10 AutoSet for Her....the humidifier is built in with this model so technically it really doesn't need to be mentioned but I would still include it and say "heated humidifier with heated hose" and that way you get the heated hose also....but RX is not required for a heated hose all by itself.
Then have the RX say "mask of patient's choice" so that your hands aren't tied to any particular brand or mask type (nasal, nasal pillow or full face).

In your situation...I wouldn't accept any machine other than the ResMed AirSense 10 AutoSet for Her.
Do the math...since you are paying for this yourself (and the masks because if the insurance won't pay for the machine then it isn't going to want to pay for the masks either) and figure out which supplier is the least expensive.
Use cpap.com for the masks and make use of the mask return insurance available for the masks...some come with free insurance and some the insurance costs $$.

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palerider
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by palerider » Fri Nov 21, 2014 10:50 pm

Minky wrote:H the Resmed S10 for Her that Pugsy recommended. Can I insist that they order the S10, or do I have to take one of the machines that they normally sell? If I can't get the S10 should I get the S9, which they have?
please note, there is no such thing as a 's10' (unless you're talking old chevy pickups.)

if you demand that they give you a S10, they MAY figure out what you want, or they may look at you funny...

it's the Airsense 10 autoset for her. sometimes abbreviated as A10 or AS10 (since there's an AC10 line coming out to replace the s9 VPAP machines.

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BlackSpinner
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by BlackSpinner » Sat Nov 22, 2014 10:49 am

Do the two week rental the way the doctor wants to with any DME he likes.
While that is happening check out the prices online. Since you are paying your own way there is no reason to use a brick & mortar DME and pay twice as much.

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chunkyfrog
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by chunkyfrog » Sat Nov 22, 2014 1:58 pm

Amen!

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sleepy1235
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by sleepy1235 » Sat Nov 22, 2014 3:22 pm

1. See if your unit can support an oximeter attachment. Then you can get your SpO2 performance every night.

2. It does cost a little over $1500. It is pricey.

I have found it to be invaluable during this last summer when I steadily increased my pressure and found that between 12 cm-H2O and 15 cm-H2O my SpO2 went up significantly and low O2 sessions stopped.

I didn't know about UARS when I got my machine, and so I was started out at 6 cm-H2O and with a retest at 8 cm-H2O. Using the Oximeter II was able to set my pressure so low sessions of SpO2 stopped.

My AHI index was low at 8 cm-H2O and so it looks like you are doing well, but you might not be doing very well at all.

I should point out that this is very much my own opinion and many CPAP users have not chosen an oximeter.

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palerider
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by palerider » Sat Nov 22, 2014 3:43 pm

sleepy1235 wrote:1. See if your unit can support an oximeter attachment. Then you can get your SpO2 performance every night.

2. It does cost a little over $1500. It is pricey.
or, if you don't happen to have a bucket of money getting in your way, buy one of the just as good standalone ones for 50-100$ and read the data into sleepyhead.

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TweetyPie

Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by TweetyPie » Thu Dec 04, 2014 11:28 pm

@Minky: I have a similar story -home sleep test showed very little, but the sleep doctor noted my symptoms and gave me a prescription for an autoPAP machine. Like you, I'm paying myself (insurance won't cover it), but I'm wondering why you needed a DME, versus buying a machine yourself online? I'm very new to this whole field, so apologies if I'm missing something important!

TweetyPie

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Minky
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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by Minky » Tue Dec 09, 2014 7:38 am

Thanks so much to everyone for all of your help!

I took your advice and called the hospital and begged for a copy of the prescription. They tried to give me the runaround - DME has your prescription and will set up an appointment within a few weeks, we could give it to you, but you would have to sign a release, which would take two weeks, etc. However, I made sure they knew that I wasn't going away without the prescription, so they agreed to give it to me if I went to the hospital in person. I finally got it, placed an order with cpap.com yesterday afternoon and it's coming TODAY! Cpap.com is the best!!! I was able to just scan a copy of the prescription with my phone and attached it to the order. They sent me a nice email stating that they had accepted my prescription and I would never need to send it again.

I'm also going to take your advice regarding the oximeter so that I can monitor my oxygen levels.

Thanks again. I'm sure you'll be hearing from me with a lot more questions once I start treatment.

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Re: FINALLY got a diagnosis of UARS and need advice about DME

Post by Tango » Tue Dec 09, 2014 5:10 pm

When I got my prescription I came to this board and found the perfect machine. I decided I wanted the newest airsense 10
So, I called the DME that my doc wanted and they tried to give me some old piece of crap. That was a huge warning flag to me. DONT use this company!
So, I called my insurance and they gave me a list of hundreds of medical supply companies near me.
I went with the company that offered me the newest machine. Up front.
We have choices. The DME and docs don't want us to know this. Call your insurance and get a list of DME and let them know you have other companies you can call. Do they want your business or not. And , if you really want to find out if they have your best interest in mind. Wait a few minutes while on the phone, play dumb, and don't tell them what machine you want. See what they offer. If it's decent then go with them , but get the cpap you want. If they offer you and old cpap or one from a third rate company RUN fast!
But, knowing what you want is a good thing. I have the airsense and love it!
Ps,,,,,stay away fro Aprea . They tried to give me the biggest piece of junk that was way out of date and not from the two top companies. Resmed and Phillips. Even with these two, who are the top, there are bricks. Gotta ask the good folks here and know what you want before you ever call the DME

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