My Intro by SickAndTired (long)

After lurking, doing some searches to answer my mostly ‘newbie’ questions, and reading a LOT, I thought it was finally time to properly introduce myself... so here goes (fair warning, nobody has ever accused me of being too terse!):


Actually, I probably shouldn’t say too much about myself from before the accident I was in last year (while sitting on my motorcycle at a stoplight, I was run over by one of those pickup/trailer combos driven by the “lawn care professionals”), since I am still dealing with lawyers, doctors, and insurance companies.

I’ll just say that before the accident I had to deal with insomnia, while ever since I got out of the hospital, I’ve been battling to stay out of bed. There have actually been more than a few weekends where, from Friday evening to Monday morning, I’m out of bed for less than 8 hours!!!

I haven’t actually fallen asleep while driving, but that may have more to do with the fact that I’m living less than 10 minutes from work than anything else.

Anyway, when my doctor finally sent me in for my first sleep study early last month (it took them about a month to finally fit me into their schedule), it seemed like a pretty good idea to me.

Only took me 14 minutes to fall asleep, which considering the environment, wires, hard mattress etc. was rather amazing! The only comment the sleep tech made the next morning was that I had one of the loudest snores he had ever heard!

About a week and a half after the study, I got a call from my doc’s nurse/assistant (I talk with her much more often than the doctor himself) telling me that I now needed to schedule a titration sleep study at the same place. Only problem was that when I called this time, they said it would be at least another 2 months before they could fit me in. Having started doing my homework on this whole “sleep” business, I was becoming acutely aware of the increasing severity of the impact this has been having on my life during the last year, and was unable to continue waiting for some prospect of relief.

Fortunately, I had another appointment scheduled with my doc a week later (I’ve been seeing him every 3 months or less since they diagnosed me with type-II diabetes after the accident), so I continued doing research with an eye to ‘convincing’ the doc to my way of thinking.

Then 2 days before my appointment, I got a call telling me that the doc was going on vacation (at the last minute?!?!) and I would have to re-schedule... and the earliest appointment available was only the week before my titration study! I was so desperate for some hope of relief that I asked the nurse if I could plead my case with the doc over the phone. She offered to plead my case for me and asked me what I wanted... I explained that I needed an RX for a {quote} AutoPAP device with CFlex {unquote}, to my great surprise she came back and told me I could pick up the prescription after work. She did ask me to give this “guy she knew” a call about filling the prescription, in addition to checking out the DME that had helped me out for the couple of months I was home-bound after leaving the hospital.

Well, I called her guy... and left a message that he got around to returning a week later!

Meanwhile, the DME still had me on file and got me in to see their respirational therapist (RT), a very personable (not to mention extremely cute) young woman. She told me that she needed a copy of my first sleep study to see if I qualified for insurance. When I admitted that I didn’t have a copy, and hadn’t heard that I was entitled to a copy, she said that she would get it direct from my doctor’s office (she later told me that I not only qualified for insurance, I had the highest ‘score’ she had ever seen).

When we finally started discussing machines, and I explained that the only machine that would fulfill the RX was the Respironics RemStar AutoPAP w/CFlex, she told me that while she had never used one, and the DME didn’t carry the Respironics line of xPAP machines, there was no problem in ordering one for me! Until it came in, I could use one of the autopaps they normally use (a DeVilbiss???).

Then it was time to talk masks. After I explained that I had always been something of a ‘mouth-breather’ and that since the accident I wasn’t able to draw as much air thru my nose, the RT very apologetically explained that they only carried 3 different brands/models of full-faced (FF) masks, but that she also had a 4th one that they had ordered for someone who had refused delivery. So, while sitting in her office I tried on all 4 types of FF masks, determined their comfort ranking (in my head) and decided that the ‘Fisher & Paykel FlexiFit HC431’ was the #1 most comfortable.

Having read that many people go through many masks before finding the right one for them, I asked her what would happen if I got it home and found it just wouldn’t work for me? She told me that as long as I brought it back within a week, I could swap it out for another mask without any questions asked! She also told me that she was on-call most of the time if I had any questions or problems.

Yes, I DO realize how lucky I got in my choice of DMEs!!! They may overcharge like all other DMEs ($44 for a 6’ hose?!?!), but at least they are providing excellent service for the added costs. Would I be willing to pay those kind of prices for this service if I didn’t have insurance to pay for it? Not a chance, but I can imagine people in certain kinds of circumstances who might find it worth the money.

Anyway, it took 4 days for my RemStar to come in (much quicker than I expected), and while I already knew that the F&P mask wasn’t going to work out, I waited the full week to see if having CFlex would make a difference. It didn’t, so back it went in exchange for my #2 choice, the ‘Respironics ComfortFull’.

Being a professional computer geek, and a gadget-freak at heart, I had ordered the ‘Encore Pro Software w/ Card Reader’ from cpap.com the same day that my RemStar had arrived. Once that package arrived, and I had downloaded Derek’s excellent MyEncore application, I felt I was ready to start ‘helping’ both the RT and my doctor with my care.

It was because of the software that I discovered my RT’s unfamiliarity with the RemStar had resulted in her setting it up with: pressure 4-20cm, CFlex=3, and RAMP=3hours!!! While the software showed me that I wasn’t being treated for the first 3 hours of each night, it took another search of this wonderful forum to turn up an explanation about the RemStar’s ‘Split Night Study’ mode.

It was this indication of the possible fallibility of my RT, and reading other pressure related posts that caused me to finally bump the minimum pressure up to a more ‘breathable’ 6cm. It was around this time that I finally got fed up with the poor fit (while sleeping... I swear I thought it was comfortable when I tried it on at the DME!) of the Respironics mask, not to mention the hideous red marks I had developed. Back to the RT it went in exchange for mask #3.

I must admit that this mask seems to be a winner, which I started suspecting it would be, ever since I started reading some of the mask threads (I can only think that I tried on the wrong size that first time). After all everyone else seems to prefer the ‘Resmed’s Ultra Mirage’, why should I be any different. I am also rather relieved that it seems that I won’t have to go to the only remaining mask; a ‘Hans Rudolph’ mask that I am nearly certain is too small for me (this is the only HR mask they have since it was a special order).

This brings us to the current week. Using all of the software at my disposal, I prepared for my doctor’s appointment by printing out every possible report, showing every possible bit of information I could get on how my sleep therapy was currently progressing. As you may have guessed by now, when I eagerly handed him this rather prodigious stack of colorful paper, he leafed through the first couple of pages, shook his head, and handed them back to me along with the rather curt statement, “Sorry, but I don’t really know much about treating sleep disorders.”!?!? Certainly explains his willingness to go along with my suggestion about the prescription in the first place at least! <grin>

At least I did manage to remember to ask the doc for a copy of my first sleep study (by this time I knew enough to interpret the thing myself!). Turns out that I had an apnea hypopnea index (AHI) of 133! My O2 level had also consistently dropped throughout the night to a low of 61% (the normal level is in the 90s). Yep, certainly explains my friends complained about my ‘crankiness’ since the accident, and I had become a zombie at work. It’s just amazing to me that I’ve made it this long.

Anyway, that night, after discovering that I was on my own when it comes to treatment, I started reducing the RemStar’s maximum pressure based on my own analysis of the data. Considering what I ‘think’ I’m seeing on the reports, I’ve identified 2 max pressures that I think could be correct for me, depending on whether I am actually experiencing the ‘runaway pressure’ phenomenon other people have reported. I’ve tried the higher of the 2 pressures for the last 2 nights and plan to try the lower max pressure tonight and Saturday night.

This ‘plan’ of mine will hopefully give me enough data to analyze on Sunday, to determine if I’m right or simply full of it...


What makes the timing of this ‘plan’ so critical is the fact that I will finally go in Sunday night for my titration study and should be able to compare my results against the ‘official’ results.



Sorry for making my first post such a tome, but if you’ve made it this far, thanks for listening.

Howdy and welcome to the board!

I read through your WHOLE introduction post and I've gotta say, it was worth reading. Quite a story!

The AHI and O2 sat levels you report are life threatening and you were wise to start treatment. What kind of AHI numbers are you running now?

Johnny

S&T, that was a great account of what you've been through so far and what you're doing about it! Very, very interesting reading.

Hope you get your treatment tweaked well...sure looks like you're handling that fine.

Do please keep us posted on how it's going.

Using all of the software at my disposal, I prepared for my doctor’s appointment by printing out every possible report, showing every possible bit of information I could get on how my sleep therapy was currently progressing. As you may have guessed by now, when I eagerly handed him this rather prodigious stack of colorful paper, he leafed through the first couple of pages, shook his head, and handed them back to me along with the rather curt statement, “Sorry, but I don’t really know much about treating sleep disorders.”

LOL, reminds me of something funny that -SWS wrote near the end of second page in this thread:

Jun 09, 2005 subject: PB420E: data discepancies between SilverLining and export

-SWS said:
"My former doctor's staff looked at me as if I were carrying a plague-infested rat when I proudly brought my first AutoPAP data disk in for a routine check up."

Thanks for the welcomes!

johnnygoodman wrote:<snip>
What kind of AHI numbers are you running now?

The originally set 4-20cm range of pressures generally managed to get it into the single digits, for the 6 or so hours I was being treated at the time. Now that I've started tweaking things, I'm consistently getting into the 5-15 range of averages for the entire night, so the xPAP therapy is definitely working for me! Of course, I'm hoping to get the numbers even lower and more consistent...

I find it amazing that I had to figure out for myself that my sleep study numbers were life-threatening. While the RT mentioned that the 'score' was the highest she had seen, and the copy of the study I finally got says that I have "severe obstructive sleep apnea" and that "The patient should be warned that those with untreated sleep apnea are at increased risk for motor vehicle accidents." nobody actually said to me that if I didn't get treated, I might die!!!

Actually, I also found it interesting that the sleep study was signed by a doctor that I have never met. He seems to have reached his conclusions based on reports and the questionaires I filled out (half-way correctly) while in my normal before-therapy 'zombie'-like state. Oh well.

rested gal: Yes, I have been continually amazed by how 'tech-phobic' so many health-care professionals seem to be!

Sick & Tired:

Kuddos to you and welcome! read your whole story and it will help many looking for some answers etc. i give you much credit for what you were able to accomplish on your own. my fixed setting was 18cm H2O for 11 yrs.
couple of weeks ago i got the remstar auto w/cflex. it is set at 10cm to 20cm H2O / c-flex at 3. so far so good. don't know if the above info will help you as you tweak your settings, as you have severe OSA as alot of us have, but we all will be interested on your final numbers and how you feel after you have analyzed it.

Thanks for sharing your story, and i'm glad your on the right track!

steve,
ufo13