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Re: Poll - How active are you in your treatment?
Posted: Sun Dec 28, 2008 9:14 pm
by SleepyNoMore
Den,
"Thank You", I really appreciate you saying that, I really do.
BTW, You aren't that far behind us now are you???
And Yes, we are definately "Soul Mates" !
SNM
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 9:43 am
by jnk
Wulfman wrote: . . . I guess I'm a "veteran hangin' & readin' newbie" . . .
Den,
I ended up getting out my dictionary to look up "veteran" to wrap my mind around your words, since if you aren't a "veteran" here, most of us haven't even made it to boot camp. Thanks for being a respected "soldier of long service" in the CPAP wars, and not being a "
former member of the armed forces" in this context. May you have many more years on the active-duty roster in the fight for quality CPAP treatment for all.
jeff (a newbie who actually had the nerve to click one of the "veteran" categories in the poll)
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 11:01 am
by Wulfman
jnk wrote:Wulfman wrote: . . . I guess I'm a "veteran hangin' & readin' newbie" . . .
Den,
I ended up getting out my dictionary to look up "veteran" to wrap my mind around your words, since if you aren't a "veteran" here, most of us haven't even made it to boot camp. Thanks for being a respected "soldier of long service" in the CPAP wars, and not being a "
former member of the armed forces" in this context. May you have many more years on the active-duty roster in the fight for quality CPAP treatment for all.
jeff (a newbie who actually had the nerve to click one of the "veteran" categories in the poll)
Jeff,
Thanks for your kind words. I guess I only consider myself a "veteran" as it relates to MY OWN therapy. Thanks to a data-capable machine and the software, I got that figured out relatively quickly. I'm on "active duty" every night and my TDY post is in my own bedroom.....armed with my "weapon" against Sleep Apnea. (to continue your military analogy)
Beyond my own therapy, my knowledge is limited to what I've read on the forum. I'm not first-hand knowledgeable about other brands of equipment and their respective software.....Bi-Level machines.....nasal masks.....etc., etc. (and don't plan on any of that type of first-hand experience any time in the future)
Den (just another "grunt" in this "war".....even though I feel more like a fighter pilot with my mask strapped on)
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 11:52 am
by ozij
jnk wrote:Wulfman wrote: . . . I guess I'm a "veteran hangin' & readin' newbie" . . .
Den,
I ended up getting out my dictionary to look up "veteran" to wrap my mind around your words, since if you aren't a "veteran" here, most of us haven't even made it to boot camp. Thanks for being a respected "soldier of long service" in the CPAP wars, and not being a "
former member of the armed forces" in this context. May you have many more years on the active-duty roster in the fight for quality CPAP treatment for all.
jeff (a newbie who actually had the nerve to click one of the "veteran" categories in the poll)
Sleep apnea boot camp is that first month, Jeff. Most of us have been through it, (some are there now...) and I'm certainly one who was tremendously helped through that miserable time directly or indirectly, by members of this forum.
O.
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 6:46 pm
by Fredman
Wulfman wrote:jnk wrote:Wulfman wrote: (just another "grunt" in this "war".....even though I feel more like a fighter pilot with my mask strapped on)
I love the imagery Den! The good thing about this place is that even if we don't always agree on things or get stuck on words, phrases or meanings - intended or not, we always have one thing in common and heard this from one of the folks here.....
We are all hoseheads!
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 6:57 pm
by Wulfman
Fredman wrote:We are all hoseheads!
Yabba Dabba Doo !!!
Den
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 7:53 pm
by grandmma
I cannot class myself as a newbie, but neither am I a veteran. However, I do monitor & check my own results, and have (with advice from this forum) tweaked my therapy to obtain better numbers, so I've voted 'veteran' in the absence of a between! Fredman, feel free to slot me in, so to speak, wherever you prefer. It'd be a cold day in hell before I went back to any sleep 'specialist' or doctor. They like to maintain control, hold onto the information, and I'm not into that at all, this forum suits me far better and I learn far more.
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 8:07 pm
by Fredman
grandmma wrote:I cannot class myself as a newbie, but neither am I a veteran. However, I do monitor & check my own results, and have (with advice from this forum) tweaked my therapy to obtain better numbers, so I've voted 'veteran' in the absence of a between! Fredman, feel free to slot me in, so to speak, wherever you prefer. It'd be a cold day in hell before I went back to any sleep 'specialist' or doctor. They like to maintain control, hold onto the information, and I'm not into that at all, this forum suits me far better and I learn far more.
Hey grandmma, so true. I have never met a sleep doc as my test was a home study and the unit shipped off to the sleep doc. His report forwarded to my GP WHO prescribed the CPAP and pressure based on the Sleep Docs recommendation!
I wonder how much a GP knows about SA, I bet we all know the answer to that one!
The DME I have used in the past is very friendly and helpful, but after my initial couple of visits (which I initiated) don't seem to care unless I pop in to discuss about buying a mask. CPAP.com is going to get my orders from now on!
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 8:42 pm
by grandmma
Fredman, in Australia we don't have DMEs, but in my case my GP (who is wonderful, and if she did not know anything about e.g. sleep apnea, would say so) recommended a home test. Results showed further action required, and she then sent me to a sleep specialist (specialising doctor) for titration. Following this I was referred to a sleep centre more or less connected to the specalist. From then my only choice was contact with someone who knew very little about the whole thing, and was next to useless in my opinion, hence my searching out this site.
The specialist wanted me to return regularly, but no chance. He gave no information out, charged $240 for a 12 minute consultation, of which only $110 was refunded by medicare. Wanted to control the whole situation through both his consultations and the sleep centre, and discouraged any active participation in the process. None of which is acceptable to me.
I'm not really capable of giving a lot of advice on these forums, but I sure know how to take it!
Re: Poll - How active are you in your treatment?
Posted: Tue Dec 30, 2008 9:16 pm
by Virtus Velox
grandmma wrote:I'm not really capable of giving a lot of advice on these forums, but I sure know how to take it!
Hahahaaa...can I plagiarize that phrase GMa? That is SOOOOO me!
I just had the same experience at Veterans Med Cntr, they got this horrific look on their faces when I declared my desire to be active in my care. A few idiot pablum spewing standard remarks and she began to try and read my results. This was just pathetic. I had to direct her to the area to read the ahi #s and how to find my leak levels. I just smiled, turned and left.
Incompetence is running the store, it seems, in more areas than just the legislative branch of our government
Virt
Re: Poll - How active are you in your treatment?
Posted: Wed Dec 31, 2008 12:05 am
by Captain_Midnight
I'm only a "veteran" xPAPPER in the sense that I've been doing this a while. I've learned much more than I've added to the forum, but I do try to help where I can.
I had no data capability for my first 2 yrs, and I just couldn't take not knowing my nightly data. My ins wouldn't cover a new machine for 2 more yrs (fair enough) so I just up and bought an AFLEX. The folks hereabouts were helpful in helping me establish a pressure range, and I've never looked back.
I see my pulmonologist yearly (I need to get a letter of successful compliance from them). He was truly pleased with my report, abstracted from Viewer files. He noticed that I've been slowly modifying my own pressures, and he was cool with that.
I'm pretty sure that the time will come when the standard of care for those apneic patients who can be relied upon to follow a protocol, will be data-capable auto titrating machines whose pressure ranges are optimized by patients, likely with some periodic DME or doc oversight as QC.
.
Re: Poll - How active are you in your treatment?
Posted: Wed Dec 31, 2008 1:11 pm
by Cajunman
I’m a newbie with just over 2 months on XPAP. I was lucky in that I got a Respironics M Series BiPap machine with integrated humidifier because, I suppose, of my titrated settings of 24 IPAP and 20 EPAP. Anybody else out there with settings that high? I’ve taken the advice found on this forum and bought the software for my machine and have tried it in auto for a week. I found, however, that I get my best sleep with the machine set on my initial BiPap settings. I was also fortunate in that I felt MUCH MUCH better after the first day of use. It took me a while getting used to the full face mask and pressure, but I feel like an old pro now.
Re: Poll - How active are you in your treatment?
Posted: Mon Nov 02, 2015 3:22 pm
by WindCpap
My prescription is dead-on perfect for me and the pressure is only 9 cmH20. I only mess with the ramp settings (I can't believe some of these settings are only available in clinical mode), and I use the data to adjust my behaviours and habits.
Re: Poll - How active are you in your treatment?
Posted: Mon Nov 02, 2015 4:16 pm
by LSAT
WindCpap wrote:My prescription is dead-on perfect for me and the pressure is only 9 cmH20. I only mess with the ramp settings (I can't believe some of these settings are only available in clinical mode), and I use the data to adjust my behaviours and habits.
Thanks for the update on a 7 year old post.
Re: Poll - How active are you in your treatment?
Posted: Mon Nov 02, 2015 5:19 pm
by WindCpap
LSAT wrote:WindCpap wrote:My prescription is dead-on perfect for me and the pressure is only 9 cmH20. I only mess with the ramp settings (I can't believe some of these settings are only available in clinical mode), and I use the data to adjust my behaviours and habits.
Thanks for the update on a 7 year old post.
in my own defense, it somehow ended up on the current timeline