New and discouraged

hairnet · Post by **hairnet** » Thu Feb 02, 2006 4:33 pm

I was diagnosed with osa (42 events per hour) in May 2005. I purchased (was given by the DME) a Respironics REMstar/Pro with C-Flex with heated humidifier and a Respironics Comfort Gel mask June 20, 2005. I also used a chin strap. Had no success with that. I had such dry mouth that I was waking every 10 minutes for water. Tried several other masks including the Comfort Full with no success. In November the sleep clinic had me try an AutoPap which I really liked but was told it was for diagnostic uses only. They then prescribed a BiPap set at 11/5 which was working fairly well but according to a PulseOx test it was not controlling my apnea events. They then upped the pressure to 13/7 and I was right back to the same dry mouth several times an hour. I again tried two full face masks with no success. Finally talked to my ENT doctor this week because I felt I was getting no communication from my sleep clinic. Asked him if I could have an APAP and he seemed to agree and said he would contact my sleep clinic. No word yet. The DME keeps telling me that the AutoPap is not used on a regular basis but for diagnostic testing only. I seem to see differently here and other forums. When I went in for a new mask I took my pillow and the DME looked at me like I was crazy. Needless to say I am most frustrated and even more so when I figured out last night that his has cost me and my insurance company in the neighborhood of $10,000 and I am no better off than when I started. I have to say I came in like a lamb asking no questions and just doing what I was told but now am feeling more like a lion. Any suggestions or comments would be appreciated. There is still a lot I need to learn.

sleepyinsunnyvale · Post by **sleepyinsunnyvale** » Thu Feb 02, 2006 5:00 pm

There is still a lot I need to learn.

Looks like you leanred perhaps the most important thing...You are the one who is ultimately responsible for your treatment and you must take charge and not let the *uninformed* steer you wrong.

Good luck and hang in there.

Linda3032 · Post by **Linda3032** » Thu Feb 02, 2006 5:11 pm

First off, find another DME immediately.

Auto's are prescribed all the time. And, the prescription normally doesn't even need to say Auto. Even if it reads CPAP, most insurance carriers will allow you to get an Auto, because an Auto can be used as a straight CPAP or an auto.

An Auto will allow you to go most of the night at a lower pressure, thus not drying your mouth out as badly. It will only bump up your pressure when you stop breathing.

Be sure to Double Check with your insurance to see if they will pay for another machine this quickly. Also, will they allow you to purchase your own from CPAP.com. You can save them lots of money.

Dry mouth: What temp do you have your humidifier on? It runs 1-5 usually. Are you sure you are turning it on? Mine does not automatically turn on. If you turn your CPAP off during the night, your humidifier will also turn off. You manually have to turn your humidifier on. Bump the temp up on the humidifier to see if that helps the dry mouth.

Dry mouth: You are probably mouth breathing. That's a no-no in CPAP therapy. Many hose-heads have to tape their mouths if the chin strap doesn't work. There is also a full face mask. Many don't like that either, but you might need one if you can't get the mouth breathing under control. So first, see if the higher humidity helps.

And lastly, find another DME immediately.

Good Luck,
Linda

jawz · Post by **jawz** » Thu Feb 02, 2006 5:36 pm

I agree, find another DME. Sounds like they are taking advantage of you and your insurance company to make some easy money.

I never used a DME. Heck, I don't even know what it stands for. I got my prescription and immediately faxed it to cpap.com. Then I ordered an Auto CPAP and have been feeling better ever since. I had to get an Auto, since I bypassed the whole clinic visit to determine my preferred settings. Seems that the Auto CPAP works well. I don't feel tired anymore.

I tend to try and doctor myself, certainly not for everyone.

Linda3032 · Post by **Linda3032** » Thu Feb 02, 2006 6:08 pm

since I bypassed the whole clinic visit to determine my preferred settings.

Wow, my kinda guy. . What pressures did you set your auto at? How high have you seen it get (during the night when you can tell it's gushing - have you looked)?

You're going to love the software to monitor your own progress. Make sure you download the MyEncore software I told you about.

rested gal · Post by **rested gal** » Thu Feb 02, 2006 6:28 pm

Linda3032 wrote:
jawz wrote: since I bypassed the whole clinic visit to determine my preferred settings.
Wow, my kinda guy. .

Yeah! What Linda said.

Worked for me, too, jawz. Glad it's going well for you.

jawz · Post by **jawz** » Thu Feb 02, 2006 6:33 pm

Linda3032 wrote:
since I bypassed the whole clinic visit to determine my preferred settings.
Wow, my kinda guy. . What pressures did you set your auto at? How high have you seen it get (during the night when you can tell it's gushing - have you looked)?

You're going to love the software to monitor your own progress. Make sure you download the MyEncore software I told you about.

jawz · Post by **jawz** » Thu Feb 02, 2006 6:43 pm

Please see question below about smart card in Remstar.

Ooops, forgot to mention that I did install the MyEncore software for EncorePro 1.5. However, I get an error when trying to run it, but I think it is due to not having my card reader installed yet and not having any data in Encore Pro. This is what I read on another post. So I'm sure it will be fine once I get my card reader and get data in the system.

Can't wait to see how I'm doing with my new Aura Headrest.

QUESTION??? QUESTION??? QUESTION??? QUESTION???

I've had my CPAP for about 4 months now. I should have my reader soon and will finally be able to see the data on the card. Question is; Does anyone know how much data the card holds? How many nights worth of data? I would love to compare the data from my older masks with my new one, without having to resort to creating new data with those masks of torture and pain. LOL.

Guest · Post by **Guest** » Thu Feb 02, 2006 8:33 pm

Thanks for the replies. I have used the humidifier at all settings 1-5 with no difference in the dry mouth. Also tried two different full face masks but had so many leaks it sounded like the tuba section of a symphony. Truthfully I feel much better when I don't use the machine. Hopefully I will hear something on the APAP soon.

Snoozie · Post by **Snoozie** » Thu Feb 02, 2006 8:50 pm

The DME keeps telling me that the AutoPap is not used on a regular basis but for diagnostic testing only.

That is exactly what they told me. I told them I know better and they were very offended. They then proceeded to say that if I ordered online, who would show up at any hour to replace or service the machine should it need it? Now, I do have to say, that is a good point. I still have to check with my insurance co. and see if I can order from CPAP.com, but I doubt it. The other option is to find another DME, which are few and far between in our area.

Guest · Post by **Guest** » Thu Feb 02, 2006 8:57 pm

Here's a link for you. They'll check with your insurance company to tell you if online purchases are covered: billmyinsurance.com

If you should need a machine replaced or serviced it would be sent back to the manufacturer just the same as it would be if you obtained it through your DME.

snork1 · Post by **snork1** » Thu Feb 02, 2006 9:24 pm

Snoozie wrote:
T... They then proceeded to say that if I ordered online, who would show up at any hour to replace or service the machine should it need it? Now, I do have to say, that is a good point. ________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, DME

Ah, selling by false FEAR! Seems to be THE method of selling ANYTHING in our society at this point in history.

Not only will 99.9999% of all DME's NOT show up at any hour of the day or night to "fix or service" your machine, but the average storefront DME will take quite a few days (or weeks or months) to actually do anything about fixing your machine. I personally think the service is MUCH BETTER through the good ONLINE sources.

Wulfman · Post by **Wulfman** » Thu Feb 02, 2006 10:49 pm

Hairnet,

It's painful to read your story. Unfortunately, it seems to be a very common scenario (with many variations). I'm glad you found this forum and that you're "feeling more like a lion". It's up to you to take charge of your therapy. YOU are the one who will have to sleep with the equipment you get......not the doctors, DME suppliers or the insurance providers.....so get the equipment YOU want and software to monitor your progress.

I purchased my equipment from CPAP.COM and am glad I did. Once I got diagnosed, I checked out the local DMEs in this area and while they all seemed to be nice folks, they were trying to push outdated or lesser equipment.....for several times more than what I paid. If I had to change anything that I've done, I MIGHT have purchased an "auto" machine, but the one I've got is doing a great job, so I don't have any regrets.

Best wishes and good luck,

Den

Severeena · Post by **Severeena** » Fri Feb 03, 2006 2:43 am

hairnet, you may want to check out cpap.com with a new script since they sell the APAP online, or go to billmyinsurance.com and they will check out your insurance to see if they will work with them.

You can also purchase the APAP out of pocketby going to auctions.yahoo,com

This is how I got my APAP.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, APAP

Kemosabe · Post by **Kemosabe** » Fri Feb 03, 2006 8:25 am

Whoa. That's a big avatar.

Here's an avatar-sized version I made for you:

Link:
http://www.sonic.net/~atomicow/severena.jpg

Mask