My experience and a heartfelt thank you (very long)

[itchysmom]

Since there is a constant flow of newbies here (myself being one of them) I wanted to share my experience with CPAP so far.

I found this forum before I ever had my titration study. I browsed the message boards, the lightbulb and the red ball with the question mark.

I asked questions and got some GREAT advice. I honestly don't know how people do this on their own because who knows where I'd be today if I hadn't had the wonderful, experienced and knowledgeable people on this forum to give me help, encouragement and advice.

Even armed with all of this as I was...I still got steam-rollered by my first DME.

Luckily, I had this forum to come to to give me the wisdom and courage to fire that first DME and find one that was more interested in me.

The first week, after having been steam-rolled by RT into getting a straight c-pap with c-flex and no data capabilities other than compliance, was MISERY!

Like Amandalee my chest hurt, my stomach hurt and I was awake more than I was asleep. I think in that first week I got a grand total of 5 hours of sleep...it was worse than the OSA!!

One week to the day after I started therapy, I took my machine back to DME and "fired" them. I called my insurance company to tell them that it wasn't working out and that the company had been unresponsive to my needs and my doctor's specific orders. (Numerous unreturned phone calls).

I found a much better DME with the help of the sleep lab.

Although, overwhelmingly, I was advised to get a Respironics M Series Auto with A Flex, after interviewing me the RT suggested the ResMed S8 Vantage.

This DME carries MANY machines from different manufacturers, and I'm sure the guy isn't getting some kick-back from ResMed because he doesn't really promote their masks that much.

But, I digress. After two weeks with my new machine and my F&P Opus nasal pillows, my Pur-Sleep and my Pad-A-Cheeks life is GOOD!!

Even though my prescribed pressure is 12, my nightly average is less than 11 My AHI averages 4.7 - 5.3, my leak rate is almost always 0.00 but never more than 0.10, and my AI is 0.00. So my AHI is comprised almost entirely of hypopneas.

I am feeling really good now, don't have any negative side effects (other than mild aerophagia), no trouble falling asleep or staying asleep.

Even though my first machine was a Respironics with C-Flex I am finding that with the auto-titrating S8 I'm not having any difficulty at all breathing out against the pressure. The increases in pressure never wake me up...so for me I find that I am not missing the A-Flex/C-Flex that I was so worried about not having when I decided on the ResMed Vantage.

And I love being able to press the two buttons every morning to see how well I've done the night before. It is very user friendly.

So, special thanks to EVERYONE here...and especially:
Rested Gal
Snoregirl
Snoredog
Dreamweaver
Slinky
socknister
sleepguy
padacheek

I'm sorry if I have forgotten anyone!!

[Slinky]

Awww shucks, ItchyMom. That was so nice of you and I'm sure it will be a help and inspiration to other newbies.

[j.a.taylor]

itchysmom,

I have to second that.

It's been just 2 weeks since my diagnosis, and 10 days since I've been on CPAP.

While I'm glad for the quick response by the sleep lab, and DME, I have to admit that I carried my machine away, with very little knowledge of what awaited.

So, I went to the web, and discovered cpaptalk.com. I wish I would have discovered this site sooner. I would have probably walked away with a different machine, been prepared with some questions to ask (how do you know what questions to ask, when you're ignorant of what questions to ask?), and had a copy of my prescription in hand.

The fortunate thing is that I've responded well to CPAP treatment. However, that's because this site has information on how to adjust my mask, how to clean my equipment, a good range to set the level of my humidity, how to position my hose for maximum comfort, etc. Information my DME should have provided, but information that they didn't give.

Unlike some, I didn't necessarily have a bad experience with the sleep lab, and my DME--just an incomplete experience. At the DME, my respiratory therapist wished me pleasant sleep, and she did tell me to feel free to call her if I had any questions. However, she didn't explain how I could have a pleasant sleep, or how to begin the process. And I really didn't know what questions to ask her, because I really didn't know what to expect.

Through this site, I've had many things answered, and so I haven't felt a need to call my RT, but I've also had some questions raised, that will enable me to ask better questions later, and let both my doctor, and the DME know that I'm committed to taking greater charge of my therapy, with a greater awareness than they may have come to expect.

[socknitster]

I am glad to hear that you are now doing so well! And very, very happy to be of help.

Jen