Feeling completely overwhelmed

[lloydjason]

The DME provider is showing up at the house on Friday 4/20. All I know is that he is bringing a cpap machine. On 4/7/2012 I had my sleep study and titatration. I don't even know what the results of that were, but obviously something indicated that I needed the machine. My appointment with my ENT specialist isn't for another week. Is it typical to know absolutely nothing or what to expect when they deliver the CPAP? I've been trying to do as much research here on the site, but it's all so overwhelming and a lot of information to take in. Do I have any sort of choice with the machine, or do I just take what he brings over to my house?

Thanks, and sorry for venting.
Jason

Lloyd Jason Phillips
http://about.me/lloydjason
lloydjason@gmail.com
Washington D.C.

[jen4700]

This is NOT normal. I would call the doctor and "demand" he/she go over the results with me before anyone delivers anything. The key is SELF EDUCATION. It's hard, but don't let the "professionals" snowball you. You've come to the right place for info.

[SleepGuy]

Jason, you should be commended to doing research. I am not the expert on your questions and I am sure that others will respond, especially when you are able to post details about your situation (e.g., what's your pressure setting?).

I can say that when the DME selects your machine, they are motivated to "sell" you the one where they make the most net profit margin, not necessarily the unit that is the best for your situation or the best value for you. Sorry, but that's a fact of life, information from a former DME salesman who used to be on here quite a bit.

I would spend some time on cpap.com researching the various machines, reading the reviews, and becoming familiar with the types of machines available.

For me, CPAP has been an acquired taste, tolerated only because I dislike being suffocated by my tongue hundreds of times a night without my machine.

My main advice to people struggling with therapy is that nearly everybody I know strongly dislikes cpap for a variety of reasons. But if you recognize the dire effects of untreated sleep apnea then you learn, somehow, to tolerate therapy. Untreated sleep apnea is bad, really horrific--death by a thousand cuts. Hang in there and you will eventually find a setup and system that works for you. Welcome to the forum.

[WearyOne]

Jen is so right. As difficult and daunting as it seems right now, you need to educate yourself. You also need to find out the results of your study. Some doctors are very good communicating with patients; others are not. (And that's in every field of medicine, not just sleep.) When you're sleep-deprived and feel miserable it can seem easier to just accept what is given and not rock the boat. But you really do need to...or maybe get someone to advocate for you if it all seems too much to handle right now.

[BasementDwellingGeek]

It may be in your best interest to let the DME know well in advance that you want a machine with efficacy data and readily available software for your own analysis purposes, and not just compliance data to satisfy the insurance company.

Janknitz has posted a "What you need to know before you meet your DME" http://tinyurl.com/2arffqx

[chunkyfrog]

You need to see the doc first!
The DME is swooping in like a vulture to clean the carcass before the doc even gets a chance to give you an RX for the RIGHT machine.

[fumbling34]

[quote="lloydjason"]The DME provider is showing up at the house on Friday 4/20. All I know is that he is bringing a cpap machine. On 4/7/2012 I had my sleep study and titatration. I don't even know what the results of that were, but obviously something indicated that I needed the machine. My appointment with my ENT specialist isn't for another week. Is it typical to know absolutely nothing or what to expect when they deliver the CPAP? I've been trying to do as much research here on the site, but it's all so overwhelming and a lot of information to take in. Do I have any sort of choice with the machine, or do I just take what he brings over to my house?/quote]

Jason--

I just got my CPAP a week ago. My DME actually asked if I had seen my sleep study, because he was prepared to go over it. For the DME to call you directly, this means that your doctor has already faxed over your prescription and sleep study results to the DME, right? How else would the DME get this info? I know that I would prefer getting my CPAP sooner rather than later.

You should be able to ask your DME beforehand, though, what machine you are getting. I did. They probably have a couple of models that they keep in stock and give out by default. Fortunately, my DME's default machine was data-capable. I actually made my DME show me some data that it spits out, too.

If I wasn't getting a data capable machine, though, I had plans to try and find another DME or have the doctor write a specific prescription.

Becky

[Madalot]

Just keep in mind that people's definition of "data" can vary. There are two kinds of data:

Compliance (ALL machines have this I think - or most of them)
Therapy Related (also referred to as 'efficiacy' data) which is what you want to be sure you have.

Some DME's & doctors either don't know or out and out mislead patients over this.

Whatever you do, make sure the machine they are bringing you has efficiacy (I like to call it therapy-related data) and not just compliance.

[IndyDave]

Just for your own sake, ask if you can exchange the machine they offer you if it doesn't meet your needs (based on what you learn about it afterwards). Likewise with the mask. There are way too many options and combinations out there to just take what's offered. If they say no exchanges, you aren't obligated to take what they bring. Just tell him "thanks for the info, let me research these things and complete my appointment with the doctor, and then I'll get back to you". Its way too big of an investment in money/time/committment/(and maybe some frustration) to not have informed options.

[RandyJ]

Jason,

In my case my ENT told me that if the sleep study determined that I needed cpap, he would have me get the machine and use it for 6 weeks BEFORE going back to see him. So it was communicated clearly to me what would happen.

However, I strongly urge you, as others have, to call the DME and tell them that you will only accept a machine that provides EFFICACY DATA - those would be the Resmed S9 Elite, Resmed S9 Autoset, the Philips Respironics System One Remstar Pro, and the PR System One Remstar Auto.

DO NOT ACCEPT the Resmed S9 Escape or Escape Auto, or the PR System One Remstar DS150 or Remstar Plus.

Most DMEs will supply one of these 2 brands. There are other brands of cpaps but these are the best to get EFFICACY DATA from easily obtainable software.

Good luck!!

PS Don't let them try to convince you to take a different machine. If you accept a machine that is not the one you want, it is harder to switch it out later.
Read Janknitz's blog: What You Need to Know Before You Meet Your DME at this site: http://maskarrayed.wordpress.com/

[lloydjason]

Thank you everyone. Initially my thinking was that I wanted a machine that would take up as little space as possible(the Fisher & Paykel looked compact and modern). Now I'm quickly discovering that I need to dig considerably deeper than what would look good on my nightstand. Efficacy data is just now coming into my vocabulary. Fortunately, or unfortunately... I have met my deductible (from the sleep study)and my claims are paying at 100%. I just hope that I won't be screwed over by the DME provider.

[chunkyfrog]

Also do NOT accept the Respironics with 'IQ' in the name--its best feature dies after 30 days.

[Madalot]

Is it possible for you to call the DME and ask them EXACTLY which machine they will be bringing you? If they'll tell you, you can post here and we can give you and "thumbs up" or "thumbs down" beforehand.

[robysue]

Thank you everyone. Initially my thinking was that I wanted a machine that would take up as little space as possible(the Fisher & Paykel looked compact and modern). Now I'm quickly discovering that I need to dig considerably deeper than what would look good on my nightstand. Efficacy data is just now coming into my vocabulary. Fortunately, or unfortunately... I have met my deductible (from the sleep study)and my claims are paying at 100%. I just hope that I won't be screwed over by the DME provider.

You can only be "screwed over" by the DME if you allow them to screw you.

The very first thing you need to do is read JanKnitz's What you need to know before you meet your DME. Then read her Data capable machines.

And then call the DME and ask them for the exact model of the machine they intend to sell you on Friday. And if that machine is not one that you're willing to accept after reading JanKnitz's blog, then cancel that appointment and tell them bluntly that you will contact them after you have your consult with the doc and find out what's going on. Because if they come out to your house on Friday with a "brick" (a machine that records nothing but compliance data), then they'll give you an incredible hard sell in your own home that you absolutely must, must, must accept this machine or sign a piece of paper saying something along the lines of "I refuse treatment" and that's not at all what you are refusing. And, quite frankly, it will be nigh impossible to avoid getting stuck with that brick.

And then call the doc's office and tell them you've been contacted by a DME that you've never heard of and that they were/are "bringing the machine" out on Friday and you don't even know what your diagnosis or prescription is. Ask them if they called the DME. And ask them why they called the DME but not you. And let the doc's office know that you would prefer to find a DME that you are comfortable with and that you'll have a DME picked out by the time you come in for the consult about your test results.

And then call your insurance to get a list of the DMEs they consider "in network" and start making phone calls. Interview the DMEs and make them earn your business. Start the conversation with:

• I've recently been diagnosed with OSA. If I choose you as my DME would you be willing to set me up with a <machine of your choice>?

If the answer is NO, then move on to the next DME on the list. If the answer is YES, then start asking about their mask return policy.

Best of luck in avoiding getting stuck with a vastly overpriced brick. And remember the price of that brick is the sum total of what you and your insurance company pay for it. So get your money's worth.

[RandyJ]

Good, practical advice from robysue!