(03-03-2012 03:54 PM)DenD746 Wrote: I determined that I wanted a RedMed S9 autoset, H5i humidifier, climate control tubing etc. I also determined that I did not want to do a titration study which, as far as I could determine, made no sense if I was going on an auto CPAP machine. So, at my sleep specialist appointment, I told him that I wanted the S9, wanted to just set it up on a range of pressures based on the prior study and then give him the results so he could adjust the settings. He was reluctant to do it that way but finally agreed to write the prescription (I supplied the equipment specs) and see me after 90 days.
God, I wish I had your sleep lab. :-)
I hate doctors. A lot of people say that... what they mean when they say it comes no where near the truth of how I feel about them. And hospitals - doctor corrals - are even worse. I am seriously phobic about hospitals, more then a half hour in one and my teeth start to itch. My jaw hurts from the effort of not shouting at people. Etc.
Did I mention I loathe hospitals?
So, I tend to not go to them. And I'm very good at self diagnosis. I've known for years that I probably have sleep apnea. I've been a snorer for as long as I can remember, been married 25 years... and in the last6 or 7 years the wife has mentioned several times that I kick or jerk in my sleep, that I stop breathing, that she often nudges me or whatever, until I start again. Etc. About 4 years ago, I started to notice that I was having problems concentrating... that progressed to micro-naps, poorer then normal memory, etc. It got to the point that if I wasn't actively concentrating, I'd start to nod off. Then it started happening during conversations that were less then stimulating...just a flick of the eyes, a long blink... and startle awake. Never happened when I was driving, fortunately - that was a high enough level of concentration.
In March of 2010, my stepfather mentioned to me that he was going in for a sleep study. I should mention that we're in Ontario, Canada. Our healthcare covers CPAP machines (or APAP under some conditions) at 75% of the cost. Interestingly, they only allow 2 sleep studies every 2 years - 1 diagnostic, and 1 titration. Anyhow...he mentioned it to me, and I kept up to date on his progress. His doctor sent him to a private sleep lab, he went in about a week later, the technician woke him up half way through the night, put him on CPAP, did the titration right then and there. He went 2 days later to get a machine (IIRC the ResMed S8, set to 14 cm). Totally hated it, tried it for a couple nights, the pressure really bothered him. Called his therapist, went in to see him that day, and the suggestion was made to put him on an Autoset at 8-16. He still found it unsettling, but better, and he's eventually gotten used to it. As to coverage on healthcare: "No problem, we'll just get your doctor to sign off on it." Total elapsed time, about 2 weeks.
So... I finally decided that I had to do something about it. I'd done my research, and was pretty sure I could see and raise his 14 cm. So, I went to see my GP - gotta have a referral. He was surprised to see me - last time I was in to see him about *me* was 1989. He asked what I needed, I told him I have sleep apnea. He does, too, so he knows about it from personal experience. So, he told me about the assorted sleep specialists in town, I said "My stepfather went here, things seem to have gone well... they have their own lab, I think I'd be okay trying to sleep there as opposed to the hospital's lab..." and stressed that I didn't think I'd be able to sleep in the hospital's lab (Even though it's a separate building.) This was in April. Next day he called me with an appointment... in August. With the head of respiratory medicine. At the hospital. /facepalm.
Stupidly, I went along with it. Went to the appt. in Aug. They told me to bring the wife, so she can tell them how i sleep. "What can I help you with?" "I have sleep apnea." "Well, we'll check you out and see if you're right...why do you think you have sleep apnea?" Actually...I didn't think it, I knew it. :-)
So, he books me in for a sleep study.
*But* we can put you on a waiting list, might get it sooner... And I did, I was there a couple weeks later. Barely slept, tossed, turned, etc. By about 5 am, the tech woke me to tell me to go home, yes, I have SA, in fact, she's going to fax my info the next day, expect to hear from my Dr. and she's recommending they get me a loaner machine in days...well before they can get me in for titration...so, an APAP machine. I got that 2 or 3 days later, with a mirage nasal mask...and set at 8-18. I'm a scuba diver - I really have *no* problem functioning with stuff on my face, and breathing pressurized air through some clumsy device, so, first night I managed a mere 9 hours. Woke up the next morning and felt... absolutely amazing. Awake. Fresh. Alert. Like it was the first time I'd slept in years. I haven't nodded off once since Aug 2010. I've started seeing the end of movies... and remembering them for more then a few days later.
They had me use the APAP for about 1 week, to gather data, then brought me in to check the 95th percentile it had established - 18 cm. "So, we should get you on CPAP at 18 cm." I asked how he arrived at that number... "if you had it set to top out at 18...and it spent 95% of the time at 18... how do you rule out it needing to be 19?" Oh. Right. Okay... lets set it to 10 to 20 for a week or two. Guess what? The number in 2 weeks was 19. Now, they set it to CPAP mode, at 19, I take it home...and it blows the mask off my face the moment the 5 minute ramp up ends. I wake up in the night feeling inflated. I *totally* hate it, but decide to try a second night. No way. by 5 am I take it off in total frustration. See... they "can't justify an APAP machine without a titration study that shows a variation of more then 5 cm..." Oh - didn't mention - now I'm having to wait to Nov for titration, I have a loaner machine until then. So...fixed cpap at 19 cm is *NOT* going to work. I complain, they set me up with a ResMed S8 at 16 because "it's an easier breathing machine, and 16 should do fine..." Nope. Had to use it that way until the titration...and hated it more every night. I felt better, but no where near as good as I did the first few weeks. And it irritated me like crazy. I actually turned off the ramp up - the only purpose it served was to let me get to sleep before it blasted the mask off my face and woke me up.
During this time, I decided that I *would* have a ResMed S9 Autoset, from my research. I got the software, read the manuals, learned how to program it, how to read the advanced data, etc.
Got the titration results... after a night at the hospital lab where I slept all of about 2 hours. CPAP at 14cm. And that got me to an AHI of 6 which is "good enough."
Not for me.
Dr absolutely refused to consider an APAP. I don't need it. We can't justify it to the healthcare. "I don't care. Prescribe it, and I'll buy the damn thing myself." Oh.
So he did...and I did. I told my RT how I wanted it set up. I showed her that I both fully understood the settings, I could also program it myself, and read the data. For my followup visit a month later, I handed the Dr. 30 days of detailed data, printed out. Clearly showing an AHI of less then 1, average pressure of 16.8, high of 19.2, lows of 14...and certainly more then the required 5cm variation for him to have prescribed an APAP. Yes, I know it's not considered as accurate as a sleep lab titration, but in my mind 30 days of data trumps 2 hours worth. After a year, the numbers were about the same. In the last few month - and after losing nearly 30 pounds since starting with the machine, the numbers are going down, AHI is often 0 now, 95th percentile pressure around 14.5.
And I feel great. So really, that's all that matters. :-)