writes4me, welcome to the board!
I'm glad you posted your experience with that less than helpful DME person. It's been awhile since I've pounced up on my soapbox, so here goes --
I firmly believe that the mask is the
#1 reason people drop out of cpap therapy. Even if they sincerely WANT to make it work, are TRYING their best to make it work, and KNOW how important it is to use cpap.
It's not the pressure. It's not the noise. Those things can be a problem, but the
#1 problem is the mask, imho.
Sheer discomfort with a mask. Mask leaking like crazy, not allowing a person to sleep in their normal positions, or
just plain hurting.
The lack of support by so many DMEs in helping people get THE MASK right leads absolutely and directly (imho) to the high dropout rate for people prescribed "cpap."
I understand the DME is in business. I understand that the more masks they have to use, the more time they spend with a person...all that is eating into profit.
My view is that the employees are too poorly trained in the first place about these things. It can be the most caring, concerned employee in the world, but the treatment is going to be more than an uphill battle if the DME employee doesn't know these things:
1. How to conduct a mask fitting. A five minute fitting while the person is sitting up and never lies down is NOT the way to do it. At some point the mask needs to be tried out while the person is laying down and turning in their usual sleep positions. AND with cpap blowing at the prescribed pressure. There's no other way to know for sure if the mask has even a chance of really suiting that person.
2. What kind of hints and tips to offer that could make a mask that's "almost ok" actually work well and work comfortably. Things to try if a mask that starts out ok at bedtime becomes a leaky miserable mess in the middle of the night.
I'd be fired if I worked for a DME. They'd have me up for causing liability issues, for inappropriate behavior, or sexual harrassment or
something because... yeah...that homemade strap thingy.
Before each customer left the store, I'd take a brandnew pair of pantyhose tights out of a package, cut off a leg, and show the person how to tie the leg around his/her head if the mask started giving trouble that night. Seriously. I would.
Out of my own pocket, I'd put together a care package for each person to take home with the mask. Pantyhose tights leg, scrunchie, adhesive hook for the wall, a PVC elbow connector, a swivel hose connector; Ayr gel for nasal pillows masks/moleskin for nasal and FF masks. Probably some more stuff, but
at least those things as a "TSKIT" -- a Tweak Starter Kit." Formal instruction sheet included on how/when/why to apply said tweaks.
I'd include pictures for them to take home of ways to hang the main air hose. Pictures right from this forum of the creative ideas people have come up with for hose management.
http://www.cpaptalk.com/viewtopic.php?t=10640I'd have a list of suggestions for things they might want to consider buying themselves to make sleeping this crazy new way more comfortable:
A PAPillow or the Shapeable pillow from Target.
A hose cover.
Pad-a-Cheeks strap covers.
They'd receive a paper describing "rainout" and various ways to deal with it -- from the simplest solution (turn down the humidifier heat) on through hose covers and up to the Aussie heated hose.
A lot of stuff to cover in just a "mask fitting session?" Perhaps. But you know what? EVERY one of those things has a bearing on getting the most important piece of the puzzle...THE MASK... to work well and let people sleep DESPITE having to wear one.
The mask can be fine, but if the main air hose is tugging it out of place every time the person turns over...
The mask can be fine, but if condensation is collecting in the mask and making a slippery cushion or nasal pillows lose their seal, not to mention dripping into the nostrils...
The mask can be fine, but if the straps are leaving marks on their face...
The mask can be fine, but if it keeps bumping against the person's head pillow when they try to sleep on their side...
The mask can be fine, but if it keeps dragging the main air hose under and around a person every time they turn over...
For those with internet access, I'd include a paper with several URLs:
A. Mile High Sleeper's excellent blog
http://www.smart-sleep-apnea.blogspot.comB. cpaptalk.com
I'd urge them to participate in the message board. I'd warn them about the DME bashing they could expect to see on the message board, and assure them that it
won't be like that at this place of business. That I WILL help them until we get it right...and above all...get their setup
COMFORTABLE enough to actually be able to sleep again.
C. Moogy's hints and tips topic
http://www.cpaptalk.com/viewtopic.php?t=14746D. Lab Rat Award fixes
http://www.cpaptalk.com/viewtopic.php?t=15104And finally...'cause it always helps to laugh...
E. Mike Moran's cpap humor posts
http://www.cpaptalk.com/viewtopic.php?t=5949Heck, as an afterthought I might even throw in the URL to "ALL Links"
http://www.cpaptalk.com/viewtopic/t1743 ... d-gal.htmlWhew. Got that rant out of my system for awhile.