When CPAP is not an option--suggestions?

[KA]

Hi, Just had my first sleep study last night. Although the tech is not allowed to "diagnose," it is pretty obvious from what she said, and what I lived through (O2 alarm going off every 10 or so minutes waking me up) a second study is going to suggested to "set up the CPAP."

I will not be going back for several reasons: I live in a very rural area and this is the only facility--it was filthy with urine from other patient covering bathroom floor (shared bathroom, no privacy), dirt and grime all over floors, etc. Also, my med insurance runs out the end of this month, and since we are so rural, it can take them several weeks to "score" the study and there is not time (clinic told me) to get this first one scored, let alone a second one ,and get equipment in place (takes up to 4 weeks after MD referral to get the equipment) before the end of this month. I have a very limited income, and so cannot afford anything that is not covered 100% by insurance.

So, having said all that, are there any resources for "tricks" or alternatives to CPAP? Raising the head of the bed, sleeping in the recliner sitting up? ETC? Any advice appreciated.

thanks, Karen

[GumbyCT]

Hi, Just had my first sleep study last night. Although the tech is not allowed to "diagnose," it is pretty obvious from what she said, and what I lived through (O2 alarm going off every 10 or so minutes waking me up) a second study is going to suggested to "set up the CPAP."

I will not be going back for several reasons: I live in a very rural area and this is the only facility--it was filthy with urine from other patient covering bathroom floor (shared bathroom, no privacy), dirt and grime all over floors, etc. Also, my med insurance runs out the end of this month, and since we are so rural, it can take them several weeks to "score" the study and there is not time (clinic told me) to get this first one scored, let alone a second one ,and get equipment in place (takes up to 4 weeks after MD referral to get the equipment) before the end of this month. I have a very limited income, and so cannot afford anything that is not covered 100% by insurance.

So, having said all that, are there any resources for "tricks" or alternatives to CPAP? Raising the head of the bed, sleeping in the recliner sitting up? ETC? Any advice appreciated.

thanks, Karen

Certainly sleeping in a recliner is an option. As is buying a machine from Craigslist. It MUST be a data capable machine then you will need the software and reader. But even before all that YOU will need to educate yourself. This is a steep learning curve. Luckily this forum is FREE and everything you need can be found here, if you search and read, then read some more.

BUT it can be and has been done. Lots of folks will help too but you will need to join - that is free too. NO Hooks - NO gimmics.

[nanwilson]

Karen
CPAP MUST be an option!!!!! Either that or we will be reading your obituary!!
Sorry to be so blunt, but you must believe it. I do not have insurance either and am a senior living on a limited income, so I too had to bite the bullet and do what I had to do to get my cpap. My dme allowed me to pay on a monthly basis, you could check this out or better still....some of the forum members here have older machines that they could perhaps pass on to you...also there's cpapauction, LOTS of machines there, and some are pretty cheap too. Check with your doctor and dme, they may have more suggestions to help you out. There are ways to get this done.......JUST DO IT!!!! and stop whining that you have no insurance....do you think your are the only one on this forum in the same situation.
Nan

[jdm2857]

One note: You must have a prescription to buy at cpapauction.com

[Janknitz]

OK, well, you've had the sleep study, so you can find out what it said. Call the sleep doctor who has to score the test (or have your PCP do it) and let him know that if he expects to get paid he better do it while you still have insurance.

If it turns out that you have moderate or severe sleep apnea, CPAP is not an option, it is a necessity. Ask for a prescription for an autopap so that you can be auto-titrated instead of having to go through a second night at the sleep lab (and you should complain about the conditions!).

Autopaps can be found--Craig's list, the auction site, or working something out with a DME. Really, I think DME's must have some lightly used machines hanging around from people who did not meet their compliance requirements or just gave up altogether, and if you ask nicely they may be willing to help you out. It's worth asking.

Masks and hoses too. If you're resourceful and ask for help when you need it, you will get it. You may have to squeeze the budget, but it beats dying while you sleep in your recliner.

[Julie]

And check with Awake in America - they help people in your situation.

[jdm2857]

Unfortunately Awake in America is defunct, or at a minimum dormant.

[unadog]

.

[DoriC]

Does anyone remember a poster recently with a machine he/she wanted to donate to someone in need? I tried searching for it but no luck.

[jdm2857]

Remember, folks, that without a titration she really needs an automatic.

Self-titration with a standard CPAP is a job and a half. At least.

[brazospearl]

Welcome to the forum, KA! You've come to the right place for answers. Janknitz has some good suggestions about dealing with your dr and the "local" DME. If you have sleep apnea, then you need CPAP therapy. Sleeping in a recliner and other tricks might alleviate some symptoms in the short term, but they are NOT going to improve your health long term. Read, read, read on this forum, then read some more, because you need to know more about your situation than your doctor, DME, and folks at your sleep clinic. You need to find Rooster's list of questions and print it out to take to the doctor's office. You MUST get a written copy of ALL the data from your sleep study. If you have OSA ( and you probably do) the prescription needs to state that it's for an AUTOTITRAITING, FULLY DATA CAPAPBLE CPAP AND SUPPLIES FOR LIFE. GET THE PRESCRIPTION IN YOUR HAND. While you're waiting the 4 weeks or whatever to get these documents, use your time wisely. Tell everybody you know/see/work with/go to church with, literally EVERYBODY, that you're looking for an autotitrating fully data capable CPAP. You'll be amazed at who might have one; you'll also be amazed at who doesn't have a clue about what you're talking about. Also, put your pride aside and find out what organizations in your community help people with paying for medical care. Any civic or fraternal group knows somebody who can help. Around here, there are fund-raising bar-b-ques about twice a month to help folks pay for medical stuff. The social worker at the local school might be able to put you in touch with somebody, too. Network, network, network! All that being said, there are ways to cut costs with your CPAP therapy. Need a hose cover? If you can't buy a snugglehose, go to Wal-Mart and buy a package of cheap athletic socks on sale, cut the toes off, and string them on your hose. As a single mom and public school teacher my low-income neighborhood, I know how important creative thinking can be when money is a problem. It's really astoundingly bad timing that your insurance is running out, but (truth be told) most insurance isn't well-suited to starting CPAP. Most people's insurance doesn't cover 100%, and the copays/rental/paperwork is rigged so that you'd probably come out ahead, dollar-wise, buying from CPAP.COM. Sorry I'm so long-winded here, I just want you to know that you can take charge of your life and make this work!

[SleepyT]

I'm not sure I can add anything to this that others have not already said. The risk of heart attack and/or stroke is 3 times greater for people with untreated sleep apnea than with people who do not have sleep apnea. CPAP is your best option. YOUR BEST OPTION!

PLEASE try to find a way to get a machine.

And welcome to the forum! We're all your brothers and sisters here...and we will kick your butt when needed!

[GumbyCT]

It's really astoundingly bad timing that your insurance is running out, but (truth be told) most insurance isn't well-suited to starting CPAP. Most people's insurance doesn't cover 100%, ..., I just want you to know that you can take charge of your life and make this work!

Just wanted to say IF you have Cigna, they pay 100%. My 1st machine was paid for by Cigna AND I received it (from the UPS driver) the very last day I was covered. I had a very similar situ to OP in that my Sleep Study was the month before. I let everyone know Ins. would expire and even got in 2 nites, back-to-back. That's the short story.

The other problem is - Cigna used to use Apria and Apria is very, very difficult to deal with - but can be dealt with. So if you have Cigna, let us know and we can go down that path. My 1st machine was a Remstar Plus and is NOT data capable. Of course I didn't find this site until some months later. So you are ahead of many of us by finding cpaptalk so soon in your learning curve.

As already mentioned you will need a prescription to buy in most legal places. So get one if you can. This CPAP stuff works like nothing else in medicine, so read up on it here.

I will ask just in case you are a military veteran. The VA has one of the very best OSA programs I know of and even accepts diags, prescriptions, and Sleep Studys from outside the VA to get you started in their program. The reason I ask is there is no charge to the veteran.

[echo]

One thing I'd like to add to all the wise advice given so far, you can get a CPAP prescription from any doctor including your GP/PCP. Then go buy a good priced auto cpap (APAP) from cpapauction.com .. you can also see if the sleep clinic or DME will let you try on some masks, and then go buy the right one from cpap.com or the auction site.

And for what it's worth, you don't absolutely need a second study with the cpap (also called a titration), you can do it that just as well at home with a FULLY DATA CAPABLE cpap.

Please do some reading about your cpap/apap options from the yellow light bulb at the top, for example:

- See especially point 7 for self-titration: wiki/index.php/Reasons_to_Use_APAP
- Data capable machines, though some of these have been replaced by newer models (eg the S9 is newer than the S8): wiki/index.php/AutoPAP#Fully_data_capable_autoPAPs

Even without insurance, you should be able to find reasonably priced supplies from the various online sources mentioned here!

Good luck, and I hope you don't delay in getting yourself a cpap setup. It's YOUR health and YOUR therapy, so go for it!

[peepers613]

If you live in or near Southeast Wisconsin, check out http://www.reggiewhitefoundation.org