My Lonely CPAP Hell Experience

[BlueHairBob]

Things are getting better, but here is how my initiation into the world of CPAP went:

I went to the sleep study and it went fine. They put me on a machine part way through the night and I slept fine. In the morning, they said, "OK, get dressed and go home." "But, don't you want to talk to me about what it means or what I do now?" "Nope, go home."

So, I set up an appointment with my family practice doc and she said, "Yep, you need CPAP. Here is a prescription - CPAP, 6cm." "Great, where do I get this filled?" "Um, I don't know, ask my assistant." Well, she didn't know either.

So, I went to the pharmacy. They said go to a different pharmacy. Next pharmacy said that there might be a place in NE Portland, but they didn't know the name.

Hospital couldn't help me. Doc couldn't help me. Pharmacy couldn't help me. I was on my own.

So, I went on-line. I did as much research as i could and made a decision and bought a machine from CPAP.COM. I hooked it up and programmed it and tried to adjust the mask and went to sleep - and after a few hours, the Auto went up to 11.5CM and woke me up and it would not go back down. Same thing the next few nights. I set the max for 9cm and it went up to that. I couldn't find any leaks and i wasn't breathing through my mouth.

Then I thought, "I think someone made a mistake here - I am not supposed to be left entirely on my own with this" and I went back to the hospital. I asked what was supposed to have happned and they told me that normally, the doc sends the prescription back to them and they send me to room 736 where the respiratory therapists with the CPAP machines live. I went to room 736 and got an appointment.

They were pretty uinderstanding of the fact that I had bought my own machine and tried to help. They set the machine for a straight CPAP at 6cm and adjusted the mask. That night, the mask was so tight that it bruised my face so bad i can't wear it again till I heal some.

Last night, I slept without the CPAP and noticed how poorly I sleep. I ordered a larger size mask (for my Mirage Ultra II Nasal) that I think will be much more comfortable (room 736 let me try one and it felt better than my standard size mask).

I haven't tried to get a reimbursement from my insurance company yet.

I don't really blame any of those people, but it has been frustrating to be on my own with this. They all thought they were doing their part I am sure. I certainly am thankful for this CPAPTALK community.

BTW, room 736 also told me that they would have charged the insurance company about $1800 for the machine I paid less than $700 for.

So, I bought a didgeridoo and I am learning to play.

[SelfSeeker]

Bob,

At least you have a humours side. It will take you a long way.

Sorry to hear about all the woes. Good thing you got an APAP.

Hopefully the pressure of 6 is your right pressure and not the wrong pressure.


Good Luck with the insurance. Tell them what you saved if they give you any trouble.

Thanks for sharing.

I haven't tried to get a reimbursement from my insurance company yet.

I don't really blame any of those people, but it has been frustrating to be on my own with this. They all thought they were doing their part I am sure. I certainly am thankful for this CPAPTALK community.

BTW, room 736 also told me that they would have charged the insurance company about $1800 for the machine I paid less than $700 for.

So, I bought a didgeridoo and I am learning to play.

[oldgearhead]

Its starting to appear 6 cm/H2O is the wrong pressure. I would set it for
AFLE (auto + C-Flex) with a minimum pressure of 6 cm/H2O and a maximum of 12 cm/H2O, with a C-Flex setting of 1. If you really don't have any leaks, and 6 cm/H2O is the correct pressure, then the APAP should stay near 6 cm/H2O all night.

The next step would be to get the smart card reader and the Encore Pro software..

You can probably forget about the insurance.

[snoregirl]

Did you leave the APAP set at the factory 4 - 20 setting when you tried it and it kept going up to 11.5?

I would keep with the 6 for a while and try to get used to the mask and the whole thing and see if you start to feel better, then I might revert back to APAP setting and try 6-9 and see what happens.

If you have software you can see what is happening, how long the machine stays at what pressure. If you bought an M series or have a ResMed you can get some data off the LED without software. You don't say what model and make you bought.

You just have me wondering why it would go to 11.5 unless you were having massive leaks or something.

Just with all the stuff you have encountered so far, wouldn't hurt to reconfirm the 6 titration at some point when you are comfortable with the unit, since you have an AUTO.

I guess hindsight is 100% but the one thing you missed in all this is calling your insurance company to see where they expected you to buy your machine.

I would do that now to see if you can get reimbursed for the purchase. If case they won't reimburse you for the cash purchase, then I might see how good the insurance is for Medical Equip (percent copay and what the deductable is over what you expect to use up in 2007 and see if it was worth purchasing a back up with insurance paying. But I wouldn't do this if you have to spend much out of pocket.

[inacpapfog]

What a disaster story! You poor soul!!! But, at least you keep plugging!!!
Keeping coming here for all the Q& A you need to get your therapy comfortable for you!

[mattman]

I'm extremely sorry to hear about your troubles. It's really never ever ever supposed to be that difficult!

I did a quick search and it looks like there are a number of providers in your area that will do CPAP equipment. Unfortunately I don't have any direct experience with any of them. (I'm going off your mentioning Portland in your first message)

I would suggest you look in your local yellow pages under "Medical Equipment". Most of those companies will do CPAP equipment. For your particular situation I would try and stay away from the Big Boys - The Apria's and the Lincare's.

If I was in your shoes here is how I would approach this:
Find a company that appears local and call them - ask them if they provide CPAP equipment. If they do and if they sound pleasant and such... Then I would actually physically GO to thier store. Walk in and ask to speak with someone about CPAP issues.

Then explain to them briefly the problems you've had. Tell them you've currently purchased a machine but you aren't really happy with your current mask and will need future supplies and such. Ask them if they would be willing to offer some help up front in exchange for billing supplies and other needs in the future. I can think of several companies in my area that would most likely be more than happy to help.

This way you get a real live person who is familiar with various equipment and tips and such that can give you the hands-on help you will need to start with and also maybe help your mask issue. They also may be able to take a look at some data and help determine where you need to be set pressure-wise.

Additionally, here is a link to a list of Sleep Specialists in Oregon. Worst case scenario you could perhaps try getting an appointment with one of these to help further assist you in your treatment needs:
http://www.absm.org/diplomates/bystate.asp?state=OR

All in all I really wish you the best of luck and wish there was more I could offer you in the way of help!

mattman

[birdshell]

Things are getting better, but here is how my initiation into the world of CPAP went:

I went to the sleep study and it went fine. They put me on a machine part way through the night and I slept fine. In the morning, they said, "OK, get dressed and go home." "But, don't you want to talk to me about what it means or what I do now?" "Nope, go home."

So, I set up an appointment with my family practice doc and she said, "Yep, you need CPAP. Here is a prescription - CPAP, 6cm." "Great, where do I get this filled?" "Um, I don't know, ask my assistant." Well, she didn't know either.

So, I went to the pharmacy. They said go to a different pharmacy. Next pharmacy said that there might be a place in NE Portland, but they didn't know the name.

Hospital couldn't help me. Doc couldn't help me. Pharmacy couldn't help me. I was on my own.

So, I went on-line. I did as much research as i could and made a decision and bought a machine from CPAP.COM. I hooked it up and programmed it and tried to adjust the mask and went to sleep - and after a few hours, the Auto went up to 11.5CM and woke me up and it would not go back down. Same thing the next few nights. I set the max for 9cm and it went up to that. I couldn't find any leaks and i wasn't breathing through my mouth.

Then I thought, "I think someone made a mistake here - I am not supposed to be left entirely on my own with this" and I went back to the hospital. I asked what was supposed to have happned and they told me that normally, the doc sends the prescription back to them and they send me to room 736 where the respiratory therapists with the CPAP machines live. I went to room 736 and got an appointment.

They were pretty uinderstanding of the fact that I had bought my own machine and tried to help. They set the machine for a straight CPAP at 6cm and adjusted the mask. That night, the mask was so tight that it bruised my face so bad i can't wear it again till I heal some.

Last night, I slept without the CPAP and noticed how poorly I sleep. I ordered a larger size mask (for my Mirage Ultra II Nasal) that I think will be much more comfortable (room 736 let me try one and it felt better than my standard size mask).

I haven't tried to get a reimbursement from my insurance company yet.

I don't really blame any of those people, but it has been frustrating to be on my own with this. They all thought they were doing their part I am sure. I certainly am thankful for this CPAPTALK community.

BTW, room 736 also told me that they would have charged the insurance company about $1800 for the machine I paid less than $700 for.

So, I bought a didgeridoo and I am learning to play.

As a rule, I don't quote the entire posting, but this one needs to be directly above for reference. This one really, as I like to say, FROSTS MY COOKIES!!

This is a CLASSIC example of what happens when the procedures are not clearly defined and the people who are supposed to know--are not informed of those procedures. This is a matter of planning well and executing the plan efficiently. Even a sign posted in the waiting room would have given Bob more direction than the PEOPLE!

Bob might have EASILY become a non-compliant CPAPer had he not been able and in the correct frame of mind to pursue the elusive CPAP treatment.

When those newbies come and ask the same questions over and over, I am going to remember that many of the sleep labs/DME providers/doctor's offices do not tell the beginning xPAPer how, when, and even why, to begin.

Gee, Bob, and there are some of us with much less taxing stories who are complaining!

Thanks for the humor, and Mike Moran: LOOK OUT!

(Bob--Mike writes some wonderfully humorous postings.)

[Bookbear]

So very sorry to hear of your problems. I hope things improve for you soon.

Two things come to mind...1, get a copy of your prescription if you didn't keep a copy of your original. 2, get a copy of your sleep study. By law, it is your right to have a copy. If the sleep lab and/or doc refuse, contact your state medical board or your state attorney general's office and ask for someone who deals with patient complaints about doctors not giving patients copies of their medical records.

Additionally, you've gotten good advice here about setting your apap machine. Of course, we aren't doctors, but many of us have had experience with mask leaks and such. A good mask is hard to find! <G> don't be afraid to try different types, such as nasal masks or nasal pillows in addition to full face masks.

A range of pressures centered on your titrated pressure would be best, but since your doc seemed clueless (really...what physician, not knowing about sources for equipment that he was prescribing, would not at least attempt to find out? 6 is a rather low pressure, anyway., so setting at 6 as a min. and 10 or 12 as a max is not a bad idea.

Look as your sleep study carefully, at the end there should be a titrated pressure listed. If it is indeed 6, then use that as a starting pressure, lower than that is usually too little air for most folks

And don't be surprised if you ARE mouth breathing some at night.

Best of luck!

[Slinky]

Wow! And I thought things went badly for me back in 1996 when I had a sleep study and was scripted a CPAP!!! Talk about knowing nuttin' from nuttin!! And being told nuttin' from nuttin'!

My sleep study was also done at a hospital sleep lab but I also had a multiple sleep latency study that same day. The MSLT only lasted until 1PM and I was sent on home. When I never heard any results I called them and they told me to come in for a titration study. The tech tried 2-3 nasal masks but not w/the machine on. Then they sent me to bed. Again I heard nothing and had been told nothing. So I called again and was told I needed a CPAP machine. By this time almost a year had passed since my sleep study and MLST.

The DME called to tell me my equipment was ready and I could come pick it up. I did, was given a 10 minute demonstration of how to use the machine, no fitting of the mask, and sent on my merry way. I adjusted to the machine but NOT to the mask. Not knowing any better I suffered for 3 1/2 months w/the beast before I went back to the DME and told them I couln't deal w/the mask. They offered to SELL me another type. And the price they quoted like to have sent me thru the roof!

At that point I had had it and told them what to do w/their precious machine and mask, left it all there and walked out.

So when I ended up having another sleep study this past March ... I was every bit as ignorant as I was back in 1996 - except I knew darn well I wasn't putting up w/that sort of treatment and lack of information this time!

Shucks, I didn't have it so bad back in 1996 considering all the run arounds you got!!!

[Guest]

I really like the reference to the nebulous "ROOM 736". I think I might start using that as the generic reference for all things related to the "CPAP blackhole". Its kind of catchy!

[ThunderSnorem]

Last post was me, sorry!

[Wulfman]

I really like the reference to the nebulous "ROOM 736". I think I might start using that as the generic reference for all things related to the "CPAP blackhole". Its kind of catchy!

Kind of like "Hanger 18" at Wright Patterson Airforce Base in Dayton?

Den

[Snoozin' Bluezzz]

That is the "best" (read worst) story I have heard yet. I can't imagine what response I might get if I walked into my local Walgreen's and showed them a prescription for a CPAP. The end result might look a little like a nuclear meltdown.

Hang in there. Do you have a smart card and reader so you can monitor your results? If so I second the idea of setting a fairly narrow range on your APAP and checking the results over 1-2 weeks to find out where you really belong and whether going Auto is good for your or not. I really like my APAP but found that I did best at a constant pressure of 9cm H2O after being prescribed at 8. Like someone said, I would consider trying 6-12 or so.

Good Luck

David

[major_works]

I really like the reference to the nebulous "ROOM 736". I think I might start using that as the generic reference for all things related to the "CPAP blackhole". Its kind of catchy!

Kind of like "Hanger 18" at Wright Patterson Airforce Base in Dayton?

Den

Sounds more like Room 237 in Stephen King's/Stanley Kubrick's "The Shining."

[gues]

This is MHS, can't log in.
BlueHairBob, if you haven't already read them, read the articles under the light bulb/our collective wisdom, especially the articles on pressures and masks. You might suggest them to your doctor, too!
You've found a really helpful group at this web site.