robysue wrote:... we're not surprised by your genuine horror stories. It constantly amazes me how many of the newbies have no idea what the make and model of their machine actually is. They have no idea what their prescribed pressure is. They have no idea if the DME set the machine up with the ramp or the exhalation pressure relief turned on or off. They have no idea what the make and model and size of their mask is. And one thing that can partially explain that phenomenon of too infrequent mask washing? Many folks are NOT given any hands on training on how to disassemble and reassemble the mask they are expected to use each night. That goes a long way in explaining how a patient can go for years with wearing a Swift mask upside down or an improperly assembled FFM...A lot of the time there's been some serious miscommunication or no communication at the beginning of the process...
I am very new, but I love how honestly kind so many of you have been to this therapist. I'm sure therapists aren't always the favorite ones (so to speak!); it says a lot that so many are giving advice in such a genuinely pleasant manner ) I've only barely poked my head out from the 2 "for newbies" sections (a very big thank you to everyone who helped with those!!!) I do apologize for the fact that I'm about to stray a bit off-topic the original post in this thread, but someone said something that really got my attention about how very little many new CPAP patients know, which I can attest is quite true.
This whole process has been a whirlwind, but WOW! I think I'm perhaps margainally more educated than I was a couple of weeks ago -- but I think I'm even more confused than ever! Right after my husband and I (45 & 37, respectively) were given the dr's Rx for a home sleep study I made my first mistake: I took the dr's word that our insurance would cover it (idiotic, I realize, but at the time there were so many things happening in our lives that I forgot to check; I think that's finally been resolved) Then I just let the person who called us w/ the test results just inform us where to go to to pick up our equipment and didn't learn about eqipment beforehand; we showed up, she told us we needed apaps, she got us two of the same machines, and probably would have given us two of the same kinds of masks, but I told her I can be a bit of a mouth-breather, so I got a mask that covers my mouth & my nose. We got some info, but clearly no where near enough!
I've no idea what size our masks are or how long it takes to figure out if mine is working right for me. (I'm not feeling well rested, but haven't in years, so 2 weeks on a machine is probably too early to tell.) So far I can't seem to get the mask tight (but not TOO tight); either I wake up w/ deep gouges on my face or it feels all right and is inevitably leaking around the seal by morning. I do know how often we get new equipment & supplies, but still don't know if we COULD have walked into the appt. & requested certain brands of machines or types of masks! could we have researched & compared reviews about our choices of where to go? (I'm guessing maybe not as we had to drive an hour to go there.) I know that we're to send the home sleep equip. people a flash drive from the back of our machines (Fisker & Paytel units w/ humidifiers) at the end of the month to see if we're being "compliant" enough for our insurance co. - but I don't know if the fact that I have an erratic sleep schedule will hurt me - nor do I know if that's even the same thing tha everyone's talking about when they refer to what software they use to interpret their sleep mach. stats...??? If not, do we research & buy software to monitor our conditions? (I would like to mention a free app on the iTunes store that has helped me monitor my sleep/REM patterns which it attempts to calculate based on your movements).
I am sorry if I'm saying things that have been addressed repeatedly; I've been reading and reading things for days now and my he'd is a bit jumbled!
Anyway, hello and thanks for letting me post my meltdown; it was therapeutic (and time consuming to tap out on an iPad!!)
-Sarah R.