After a long journey to diagnosis, sleep study, tritration and finally a prescription (... Did you bring your data card? asked the tech when I thought I was going to see the Dr. "What data card" I asked, you haven't sent me or the DME a script yet."....) I finally had an appointment to go in and get my machine. Except when I got home from work the night before there were 2 messages on my answering machine do to a death in my therapist's family my appointment was being moved from 9:00 (I'd rescheduled a previous appointment to make this... Getting my machine was more important than the haircut I also need.... to 11:00 which is when I had to be on the road to Atlanta to make a 1:00 appointment that couldn't be rescheduled. I was heartbroken, but knew that I would have to reschedule for next Friday.
I got up yesterday, made my way to the DME which also houses my pharmacy so that I could get more blood pressure meds and reschedule, but broke down crying as I was trying to explain that they had to find a time for me the next Friday before all the afternoon appointments that I had scheduled (and rescheduled). Seeing me at the end of my coping skills they got me in and started the issue the equipment they had already picked out for me.
As the very nice respiratory therapist who gave up her own appointment in employee health in order to see me before I had to leave for Atlanta was taking out a S9 Elite I was saying that I wanted a ResMed S9 AutoSet with humidifier and heated hose and that I wanted to try the Airfit P10 nasal pillows and the Pilairo Q. She stopped, looked at me flabergasted and fumbled to get my script out of the chart, "No, your Dr. has ordered a CPAP for you with a pressure of 6. I can't give you the AutoSet."
"Sure you can," I replied. "The AutoSet can be set to CPAP and then you can put my pressure at 6."
"But your insurance won't pay if your doctor orders a CPAP" I was told.
"But the codes are the same. The insurance company doesn't care. They will pay for either," I counter.
"But they cost different. We can't do that," she stutters looking again at my prescription. "Oh wait... your doctor wants all this data... uhm... uhm.. I don't think this machine does that. You'll have to have the AutoSet."
I kept my mouth shut.
The Elite was packed up and returned to the storeroom and the AutoSet brought out. We then worked through getting it set up with the therapist actually letting me be involved as long as it was turned to CPAP and a pressure of 6. I goofed up when we got to the data setting and it got put to usage but she was trying to give me access. She just didn't realize (and neither did I) that she hadn't. Something else is turned on that is normally turned off so that we "uniformed consumers" are messing with the machine. But since I was obviously well read on the subject and was going to want to see whatever that lets you see she left it on for me. ... I'll figure it out eventually.
Next we worked on the masks. No Airfit P10's. Not carried. When asked why she couldn't give a good reason and rambled on about how little storage space they have and the need to keep replacement cushions which come in 3 sizes (you know) in stock. We went on the the Piliaro Q which they did stock & I really liked. Then the chink strap. Then I asked for the software to go with the machine, stating that I knew insurance wouldn't cover it, but I was willing to pay for it. I got another one of those blank looks. "There is no software for this machine," I was told. "Of course there is," I replied getting out my iPad and pulling up an internet page with the machine and all the specs for it. So she's still researching that one.
Lots of paperwork later and I'm finally on my way at 11:00.
What she taught me though, she did well & I was able to assemble my machine last night, get the headgear on & have everything function perfectly. She had be practicing each step while we were setting things up and I greatly appreciate that. Then I read for about 20 minutes to get used to breathing with the machine, turned the lights out and was asleep very shortly thereafter. (about 12:20 am). I slept for 2 hours, got up to use the bathroom forgetting that I only had to unhook the hose. Managed in the dark to put the headgear back on and then spent about an hour getting back to sleep. But I did. And slept until 6:30 this morning with only short arousals to reposition the mask & check the time to see if I'd made it to 4 hours yet. After reaching that mark I seemed to relax better and just slept the last 2 hours. I don't remember waking anyway.
I got up then, let my parent's dog out (visiting for Mother's Day) and fed her. Then read the machine's manuals, cleaned the mask, and figured out we messed up the reporting settings yesterday, came here and found the information, reset the controls, read the screen report, looked up the information on the HPA Lanolin I wanted to try tonight and then realized I'd gotten this all done before 8:00 AM!!!! It was amazing.
I'm tired now, but overall I've had a pretty good day. I'm actually looking forward to going to sleep tonight. I'm praying that it will be another good one.
Sorry, I realize this is long, but I'm so glad to finally be a "hosehead" that I wanted to share it with you all.