Just diagnosed...no machine yet!

[Gaga58]

Hello all...I am really just getting started...no machine yet, but am to be scheduled to go in for a titration (?). I've been trying to read as much as possible beforehand in order to know what to ask for in machine and mask, although I also assume the insurance will play a big role in making that decision for me! I know a few people personally who are on c-pap...and there are mixed views. Have the ones that say they won't go anywhere without theirs and others who say they couldn't stand it and quit using it (and there are more quitters than users!). I've had high bp for years and never really understood why, also haven't slept good for years and always laid it on to stress, morning headaches have become so routine I just assumed it was something to live with. However, when I started nodding off at my desk (I work in a high school!!) I decided there had to be something more going on than just "not sleeping well"! And I guess...well...I just got tired of being tired!

Anyway, went to Doc, told him what the deal was, he sent me for a sleep study. I have OSA and oxygen sats were 80%..not sure what that means, but the girls said it wasn't good, so I'm just waiting on the sleep clinic to call and set me up the appointment for the next stage. I guess if I had a question it would be this: is there any particular one machine and/or mask that would work the best for someone just starting this therapy? Appreciate this forum and all that I have read so far, but know I have lots more to read on this subject...just hope I'm one of those "miracle" folks who feel energized after the first night!

Oh, and as to the user name....I had it long before the singer came out with hers!! LOL! My oldest granddaughter started calling me that as soon as she started talking and it's stuck, so I am now and have always been "Gaga" to the grandkids!!

[sleepnationtv]

Welcome,

I have put together a site with videos that show you the different machines and mask options. Your insurance will pay for whatever machine you decide to get. The DME may want to give you a cheaper machine because than they make more money but they have to give you the machine you want. If not find another company that your insurance accepts. They can't force you to use one company.

Here is the link http://www.cpaplibrary.com

Dane

[jimnsc]

Welcome to the forum G - One thing I did not do during my titration I would recommend you do if need be. I didn't sleep well and I stuck out the entire time in a full face mask that leaked like a sieve. Knowing what I do now I would have asked to try either a nasal mask or nasal pillows. I was convinced I was a full blown mouth breather but that has turned out 'not' to be the case as I use pillows now.

Because of the importance of what you're about to undertake I think it more than reasonable to ask for other masks if you aren't sleeping with the original one. If you should sleep like a log all night just count yourself among the fortunate minority.

Lastly, your attitude determines whether or not you stick with the treatment; however, be sure you're doing things correctly as you go and it will make it easier to have a good attitude. This forum will prove to be more valuable to you than a sleep doctor in that respect.

Good luck to you - Jim

[robysue]

Gaga58,

First, welcome to the forum

You write:

I've been trying to read as much as possible beforehand in order to know what to ask for in machine and mask, although I also assume the insurance will play a big role in making that decision for me!

Unless your insurance is an HMO with its own salaried doctors, the insurance company will most likely pay for the CPPAP equipment by code number. And all CPAP/APAP machines fall under the exact same code. (BiPAPs have a different code though.) So your insurance company will authorize the same payment to the DME regardless of whether they set you up with the most basic (possibly out-of-date) brick that records nothing but compliance hours or a brand new Resmed S9 AutoSet, which seems to be the most expensive APAP out there right now.

So BEFORE you go in for your titration study please take the time to read (and re-read) Janknitz's excellent blog post, What You Need to Know Before You Meet Your DME, Part I.

And start doing the legwork NOW to find a DME that YOU want to do business with rather than simply allowing the sleep lab or sleep doctor's office to foist a DME that you know nothing about into your life. So while you are in "hurry up and wait" mode, here are somethings that you really need to do:

1) Call your insurance and find out about the following things:

• Coverage of durable medical equipment---xPAP equipment in general. You need to know what your copays for the equipment are going to look like---don't just assume that coverage will be good. Don't assume that coverage will be similar to coverage of prescription drugs. And DO find out if they pay for CPAP machines by code.
• Specifically ask the insurance company about in-network DMEs. The more names of DMEs on the list the better. And see if there are any DMEs that specialize in CPAP equipment in your area and whether those DMEs are "in-network".

2) Start callling DMEs NOW---or rather as soon as you get a list of in-network DMEs. You want to be the one who chooses your DME instead of letting the doctor or the sleep clinic chose the DME for you. You want to find a DME that you are comfortable with. And ideally you want to find a DME that will be happy to set you up with the full efficacy data (auto) machine of your choice---even if all the prescription reads is "CPAP at n cmH2O". So start screening DMEs while you're waiting to here back from the doc since you already know they did a split study on you and only let you sleep for 1 1/2 hours before strapping a mask on your face. You could use this as the first screening question for every DME you call: I have been diagnosed with OSA and am looking for CPAP equipment. If I chose you as my DME, would you be able to provide me with a <machine of your choice> for my first CPAP machine?


3) Continue reading here (and elsewhere) all you can about OSA so that you can go to your followup with your questions about the diagnosis and your CPAP prescription. If you have a lot of questions, write them down so that you don't forget them.


You also write:

I know a few people personally who are on c-pap...and there are mixed views. Have the ones that say they won't go anywhere without theirs and others who say they couldn't stand it and quit using it (and there are more quitters than users!). .....

Appreciate this forum and all that I have read so far, but know I have lots more to read on this subject...just hope I'm one of those "miracle" folks who feel energized after the first night!

Here's hoping you are indeed a duck. But one word of caution: Reasonable expectations of what you will likely feel like for the first several months is important: Many of the folks you know who said they couldn't stand CPAP likely expected a "miracle" and got "lots of hard work to make this (silly, embarrassing, horrid, noisy, fill-in-favorite-negative descriptor) therapy actually do some good" and gave up trying to make CPAP work before giving themselves enough time to genuinely become fully adjusted to the machine.

Because the sad truth about CPAP compliance is that many (probably most---in the sense of more than half) OSA patients prescribed CPAP do abandon the therapy within the first year, and often within the first several weeks or months. And why? Conventional wisdom is that the patient is simply unwillling to put up with the inconvenience of sleeping with a mask on their hose every night---i.e. the "blame" is typically put on the patient, who in turn puts the "blame" on the machine. But in my humble opinion, the truth about why so many give up is much more complex and spreads the blame out: Too many OSA patients are given CPAP bricks that record no useful leak and AHI data; receive far too little patient education and support before they hit the inevitable difficulties in actually using the mask; experience more sleep deprivation, aerophagia, leaks, and other problems than either the doctor or DME expected; get far too little quality help from the DME or doc in resolving all their adjustment issues; and then simply decide that CPAP is just not worth all the trouble since they're not feeling any better after a few weeks or a month or two of starting CPAP therapy. When you think about it, it's not really a surprise that for OSA patients with this kind of initial CPAP experience to just give up after a while and simply quit using CPAP altogther.

Best of luck. And I really do hope you turn out to be a "duck"

[archangle]

Welcome to our little community here.

You have a golden opportunity to get this right the first time, unlike most CPAP users.

Ask the quitters you know if they still have their old machines and are willing to part with them. You may be able to save a lot of money. You can easily set the machines up yourself.

Don't make a deal to pay for any of these quitters' machines unless you check prices online, like at cpap.com. Preferably post the exact model here before making a deal and well tell you whether it's good or not. We can give you some advice. Be careful about getting the exact name of the machine, or take a closeup picture of the top and bottom, or even borrow the machine. Be careful about the info. If you post that it's a "REMstar" machine, that could be one of a dozen or so machines, some horrible, some fantastic. We'd need to hear something like "Respironics REMstar Auto M series" to know what to say about it.

Much more advice later, but one quick piece of advice. Your DME (the person who sells the equipment to you) will almost certainly try to screw in in several ways, most importantly by trying to sell you the wrong machine. Be an informed DME victim err... customer. We can help. Read robysue's post and links.

[AmIawake]

One detail I've seen repeated is about the use of in-network DME providers. Like everything else, it's what your policy states. My health insurance doesn't require use of an in-network DME. So I used cpap.com and have submitted an insurance claim form with itemized receipt for payment. My insurance company will of course not reimburse beyond the reasonable and customary fee for either an in-network or out-of-network DME.

[robysue]

One detail I've seen repeated is about the use of in-network DME providers. Like everything else, it's what your policy states. My health insurance doesn't require use of an in-network DME.

That's part of the point of specifically asking the insurance company about in-network DMEs. If they don't require you to use an in-network DME to get the maximum benefit, knowing that up front is critically important since it does allow you a lot more freedom in finding a good DME.

But many, if not most of us, are required to use an in-network DME if we want our insurance company to pay for things.

And knowing exactly how the insurance company will pay for the equipment and how much they'll pay and what your deductible or copays will be is also critical. Because for a few folks, the copays or durable medical equipment coverage is so poor that the person may well be no worse off financially if they just choose a DME and pay out of pocket--particularly if the DME of choice is an on-line DME like our host cpap.com. And if a particular person falls into that category, they can certainly save themselves a lot of grief and DME hassels if they know this beforehand. But the only way to figure this stuff out is by calling the insurance company and asking detailed questions.

[Gaga58]

Thanks to all of you for all the good information...I've got pen and paper in hand writing it all down. It seems I won't be going in for the titration thing until the 1st of Aug. so yes!! I will now have more time to make calls, read up, and hopefully become well informed. I'll be posting more I'm sure and thanks in advance for letting me ask questions!

[Janknitz]

Wow, you've gotten some great advice here. I love it when we see people BEFORE they've been bamboozled by unscrupulous DME's. You won't walk into your DME with a sucker sign on your head--Score one for our side!

Don't skip contacting your insurance company to understand your CPAP coverage. That's the key to making sure the DME's don't try to pull anything over on you.

[Gaga58]

I've been looking over some of the machines on cpap.com and trying to watch the videos from your library (I have dial up so this is an all day process!!) and had a couple questions: Should you always have a machine with the humidifier or is that just a preference and either way, is it better to have one built in or separate? Is it necessary to go with the high end machines, as far as getting the data readings, auto settings, ect.? Waiting on insurance to find out just how much they will pay but was surprised to see such a variance in price ranging. Also, am thinking I do know a quitter who has a machine and as far as I know only used it once or twice..will try to find out if they are interested in selling, how much, and what it is and give you the specs here for your advice.

[Pugsy]

Should you always have a machine with the humidifier or is that just a preference and either way, is it better to have one built in or separate?

Most people will need at least a little added moisture for comfort. I happen to need a lot and couldn't do without humidifier. I like the integrated (built in) humidifier because it gives me a nice small one package thing on my night table. Though there are some advantages to stand alone humidifier. Rested Gal could explain that better than me.

Is it necessary to go with the high end machines, as far as getting the data readings, auto settings

Difference in price is not all that huge. You may not need the Auto but don't scrimp on data.
My machine (Auto) and humidifier at cpap.com costs $535 machine plus 135 humidifier.
The straight CPAP with full data is the Pro it costs $435

When using DME and insurance unless special HMO thing, the price should not vary, get as much as you can for your money with whatever machine brand.

The Auto is $100 more online... it is 2 machines in one. It can be used with varying pressures or straight cpap pressure.

Unless you have some special needs requiring the higher end machines like Bipap and up, there is no need to worry about those costs.

[Gaga58]

Thanks Pugsy...another question...I've noticed most of you have software "...." in your machine descriptions under additional comments...what is that or maybe what exactly does it mean?

[Pugsy]

Thanks Pugsy...another question...I've noticed most of you have software "...." in your machine descriptions under additional comments...what is that or maybe what exactly does it mean?

Software to get details on reports that don't show up on the machine's LED screen.
Here is example of what I can use or see.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

ResMed machines also offer extra data with software along with on screen data.
There are many who use it.

DME's and doctors aren't too keen on us having access to the "secrets" in the software so I wouldn't mention it as part of your negotiations. We can help with the software.

There are other machines that offer software but these 2 are the main ones it seem. Easily obtained.

[Gaga58]

Okay...sure hope that figuring out that whole software/data thing is not a requirement anytime soon!! I couldn't make heads or tails of any of what I looked at!! I'll get back to that part later!!

[Pugsy]

Okay...sure hope that figuring out that whole software/data thing is not a requirement anytime soon!! I couldn't make heads or tails of any of what I looked at!! I'll get back to that part later!!

Just figure out what machines will work and worry about the work later. Huge learning curve to start with but it will become so easy later. Trust me. Been in your shoes. I have a broken wrist so my typing has been limited but am trying to think of a way to offer a brief tutorial explaining the software reports data in an easy to understand way. I already have one for installing and actually using Encore Pro for newbies. Composing is not easy for me even with 2 good hands to type.

I will share that when I started down the cpap road I was clueless as to all the acronyms. It took me 3 days to figure out DME. So read, read and read some more. Little by little it will stick. Regarding data machines...I knew what I wanted first. If I had not had a full data machine I would never have known that initial prescribed pressure wasn't quite good enough. Having the software enabled me to see straight away why I was having problems and do something about it. If I had not been able to see things and do something about it (thanks to all I learned here) there is no doubt that the machine would have ended up in the closet.

Can someone do well without data? Sure they can but it is well worth the little bit of extra work to get a full data (not just compliance hours of use data) just to have the ability to monitor things. Helps put the mind at ease and the mind is a powerful drug itself. If you were diagnosed diabetic would you be satisfied with just being told to take x amount of insulin based on "how you feel"? To my thinking cpap is no different.

You will do fine. You will learn and, with time, have a really good handle on all this. It really isn't rocket science though at first I know it seems like a foreign language.