1st post, started 2 months ago

[Csr21]

This is a great forum that has helped me considerably. I'm a bit embarrassed that this is my 1st post. Initially I was so exhausted when I started CPap that it was all I could do to just read it. I feel the frustrations of others with lack of support from the DME (Apria), lack of knowledge and follow up by my pcp and the feeling that I'm left to flounder on my own.
Concerning Apria, yes, they are useless, but when I scream loud enough I get results. I went through the chain of command until I had no other option than to email Dan Stark, CEO where I got immediate contact and resolution for that moment and we'll see where it goes the next time another issue arises. But 20 minute wait times, different answers depending on who answers the phone and no follow up contact are the norm.
I requested a sleep study from my medical practice (can't say pcp because in 2 years Both my spouse and I had 4 different providers assigned so no continuity of care...we're changing practices) and had a home study. A home study would be fine except that it doesn't give a full picture, especially when each provider is unfamiliar with me. I just had my 1st follow up appt since starting therapy with yet another provider, supportive spouse at my side and issues of average 6 hr of sleep, review of therapy, addressing lower extremity edema (ECHO was normal) weren't even addressed. He actually became condescending when I didn't know answers to his questions and I suggested he check my chart. I would have thought Apria was sending monthly results to the medical practice? Had I known it was the practices responsibility to download the info, I would have been more proactive, but like most of this journey, I'm wandering on my own.
As I said, I average about 6hours of sleep. The machine will have a readout of 7, but it takes me a while to get to sleep then I'll wake up, stay on the machine a while trying to get back to sleep and I either do or don't. About a week into therapy when I was only sleeping 4-5 hours the then assigned provider instructed me to take melatonin, which I 've been taking every night since then. I probably take 5mg Ambien 1-2 nights/wk when I know I have a full day the next day which helps. I definitely feel better during the day, am staying awake, beginning to feel more energy, sleeping through the night rather than getting up every 2 hours to run to the bathroom. I had an AHI of 75 so I understand AHI of 3.5 to 5.3 range are excellent and possibly 6 hours of sleep is all I require. I might need a nap during the late afternoon but I'm no longer falling asleep in my morning coffee!
Headaches have mostly subsided. I probably needed to get used to the nasal pillows. I started off with a nasal mask until I got a pressure sore on the bridge of my nose. The pillows are working pretty well. I have considerable generalized joint aches since starting therapy which I can only attribute to lack of "night time exercise"! I tried using the Wisp Bella but it doesn't seem to sit properly or I don't have it adjusted right...any suggestions would be helpful. The regular pillows that I use work ok.
I guess I didn't ask too many questions. I want Newbies to know there is "Sleep At the End of the Day" and to just ride it out. I decided that the word "Care" has been dropped from "healthcare" and that Customer Service is now renamed to "Cost You More Service". Sad that this is coming from a retired nurse!
Thank you all for being there and unknowingly supporting me for the past 2 months!