Thanks for all your help

PhillyPat · Post by **PhillyPat** » Sat Dec 10, 2005 12:25 pm

I just wanted to say how much I appreciate all I have learned about OSA and CPAP useage from you all. I wrote after I had my first sleep study on October 30 and then again after the titration. When I had my first study, I didn't realize how new and how little the sleep tech knew. It took him forever to hook me up (I didn't get to lights out until 11:30, was never told I should spend part of the time on my back (which I never do), and couldn't remember what occured during the second sleep study. On the second (titration) study, I had a much more experienced tech. He really didn't volunteer any information, and I had to ask questions (which I knew to ask from your discussions and talking to my son-in-law who is an inhalation therapist in Seattle). I never met with a sleep doctor. No one ever voluntarily gave me any information about sleep apnea or treating it.

After persistent calls, I managed to get copies of my reports (summaries) and a copy of my prescription faxed to me. There was a vague reference about the doctor calling me, but that never happened. There was also a vague reference about having to go in to see the sleep doctor after I had been on the CPAP for two months. I'm not sure whether that will happen. Because I am already on oxygen therapy for hypoxia with exercise, I asked the person who handled the paperwork to refer me to the same DME for the CPAP, because I really like my inhalation therapist. When I got back from my Thanksgiving trip, I had a call from another company and said no thank you I am already working with this other DME. Then I called the sleep lab office back and again requested that they refer me to my therapist's DME.

Of course, the sleep study ignored the fact that I am already on oxygen, even though without the CPAP my levels dropped to 60% and with the suggested titration they were still at only 89%. Fortunately, my therapist is not one of the evil DME people. He came to my apartment and brought the Goodknight 425G that I requested (I'm with an HMO and already knew that both the auto and the CPAP.com were not available) and humidifier. He spent an hour going over the machine and fitting the mask, being sure to have me lie down in various positions to see if it leaked and make adjustments. He was greatly frustrated with the sleep lab because he had called them repeatedly to ask about the oxygen but had not gotten any calls back. He brought an adaptor and showed me how to hook up the oxygen supply to the CPAP. He then called me that weekend to make sure everything was working okay and find out if I had any questions. I know my DME is the exception to the evil DME.

I guess why I'm relating this is to say that for those like NewGal, you really do have to call and be persistent with either the sleep lab or the insurance because you are the one most affected. And, also, to say that if I had not been able to educate myself prior to the sleep studies by posts made by many of you, this whole process would have been overwhelming because I did not get any information/help from the sleep docs. I am very fortunate to have a good IT who has been extremely helpful since I've been diagnosed, but you all really made the difference in my understanding and acceptance of the need to become a fledgling hosehead. I have to add a special thank you to Mike Moran for his humor in this whole process.

Colorado Jan · Post by **Colorado Jan** » Sat Dec 10, 2005 1:21 pm

How nice that you have such an excellent DME! But I am stunned that your sleep study says nothing about you already needing supplemental oxygen. If that doesn't ever point out that these sleep people really need to get their act together, nothing does!

Wishing you continued luck with your therapy...

Jan in Colo.

Guest · Post by **Guest** » Sat Dec 10, 2005 6:20 pm

You might do as I did, I got a second 50 foot O2 line and ran it to the bedroom and put the O2 Compressor in the dining room. It made it easy to switch O2 lines at the O2 unit and kept the noise and heat out of the bedroom.

Tash · Post by **Tash** » Sun Dec 11, 2005 3:25 am

PhillyPat,
It's heartening to hear that there it does work out for some of the newbies here. I am still plugging along. Just waiting for the weekend to get over before I start my next barrage of phone calls. I am trying to get a restful (ha!) weekend in, to have some energy for the daily battle with the insurance company/DME. I have learned SO much on this site, and am SO appreciative for all of the advice I have received. I am hoping my situation will be resolved this week (either with Gentiva/Cigna's medical board or with Billmyinsurance.com).

I am glad you have a good DME, sweet slumbering!

PhillyPat · Post by **PhillyPat** » Mon Dec 12, 2005 10:08 am

Thanks Guest. I actually have my oxygen converter out in the hallway on the suggestion of my therapist. It is much noisier than the PB CPAP, but luckily I am a city girl. I can't sleep without the sound of a few muggings, police sirens, etc. Seriously, I find both the oxygen converter and CPAP sounds very soothing. Of course, I have been so sleep deprived for so long that I can still sleep anywhere under any conditions (except maybe complete silence!). I already feel much better on CPAP, but am still sleepy during the day--not that I will ever get to see the sleep doc to tell him!

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