A Question re: my AUTOPAP Trial

[GumbyCT]

I don't know if I'll ever feel okay about naming names publicly. I'll just tell anyone local to me who's considering a sleep study to go elsewhere and find a really good doctor.) I'm happy I'm no longer his patient, and my goal now is just to get well-situated with my new doctor and finally receive the kind of attention and the level of care that each of us deserves..

Was it LBJ who said "Sunshine is THE best disinfectant"? If it is true - how could they be upset? Or why would they be?

At the very least, I would file a complaint with the state licensing authority. It is because of folks who turn their heads that this level of service persist.

[BleepingBeauty]

I don't know if I'll ever feel okay about naming names publicly. I'll just tell anyone local to me who's considering a sleep study to go elsewhere and find a really good doctor.

Was it LBJ who said "Sunshine is THE best disinfectant"? If it is true - how could they be upset? Or why would they be?

Well, I haven't posted anything that isn't true. Most of it is personal opinion, of course, and I haven't mischaracterized anything that I've experienced under his care. But since some of my posts on this forum were cited in their dismissal letter, they obviously ARE upset about it. (Not that I care; that's just how it is.) Nobody likes to be dissed, and I'm sure my ex-doctor is no different. But none of that matters. I no longer have to deal with him, nor him me. Right now, I just want to get on with my treatment plan and get rid of this bad taste in my mouth.

At the very least, I would file a complaint with the state licensing authority. It is because of folks who turn their heads that this level of service persist.

Believe me, I wish someone had given me a heads-up early on, so I wouldn't have wasted all this time with unsuccessful treatment. I can only strive now to do that for others. But not to worry. It won't end there. I'm compiling the pertinent info to make myself heard on a larger scale and will take further action when I have everything organized.

[ozij]

What I find most impressive in this story it that after setting you up for a week of split nights that start with 2 hours of highly sub-optimal pressure, they discover this on the forum, and do not call you back to correct the setup, but rather trump up a story that you did not comply to therapy.

Sounds to me like someone is running very scared -- any chance that the person who blew the setup is the one reading the fourm, and lying to their boss?

Could be they're still reading the forum, by the way.

O.

[StillAnotherGuest]

SAG's first URL in his above post has an extra letter "t" before the "http" text. So here is that same link fixed.

Thanks for doing that, -sws.

Believe me, I wish someone had given me a heads-up early on, so I wouldn't have wasted all this time with unsuccessful treatment. I can only strive now to do that for others. But not to worry. It won't end there. I'm compiling the pertinent info to make myself heard on a larger scale and will take further action when I have everything organized.

What do you have in mind?

SAG

[BleepingBeauty]

Also, I was laughing at a thought I had when I read this post by SAG, way back on page 1:

With not much time studied on low level PAP, which is essentially event-free, and too much time on higher pressures, which is chock-full of events, many apparently central in nature, getting more data on low level PAP could be very helpful. Locking that thing at low-level PAP for a couple of hours could be a good idea, since I don't believe there's any guarantee that it will correctly identify NR (central) apneas and stay at low level in straight APAP mode.

I started to post a reply then -- "Dammit, SAG, darlin' !! If anyone from that doctor's office happens to be reading this message board, you've gone and given them a convenient idea to get them off the hook if setting Split Night Time was the complete flub-up I think it was!"

RG, I remember reading this part of your post earlier, but I didn't comprehend it very well at the time. (As we all know, deprivation has some serious negative effects on the ability of the brain to function at adequate capacity. Hell, I've been screwing up on simple Sudoku puzzles lately...)

I just wanted to say in response that, although I definitely do appreciate the concern, it was unfounded. As you say, the argument posited would have given them an easy out for their mistake. Instead, they say in the letter that, "Our technicians always dispense the Auto CPAP unit with the ramp feature on "OFF" when it is being used to check the patient's required pressure." Well, not this time. The letter goes on to say that, "Your messages on the CPAPTalk.com site clearly state that you did, in fact, change the ramp feature setting and as I am sure you are aware, patients are never allowed to change any settings without our direction. The reason is obvious; this could be very dangerous for the patient if incorrect features are activated." (Tell me about it!)

First, can anyone here point out to me where, in this thread (or anywhere else on this forum), I said what they're claiming? I admitted getting into the clinician's menu to see what the settings were. But I never changed anything; just scrolled through the options and posted my question about the ramp setting reading "2:00" because it was so confusing to me. I relied on these people to do their job properly (to my detriment). Why would I post here, inquiring about how the machine was operating, if I didn't think there was something wrong with the settings they made? (As an aside, they must be having a canary if they're reading messages here - and you KNOW they are - with so many people monitoring their own therapy and adjusting things as they see fit, based on their data numbers and how they feel, without first obtaining the blessing and permission of their almighty doctor.)

The letter continues with, "I assure you that our credentialed technicians are well trained and did not do this. In addition, I am very disappointed to read on your blog messages that you feel our technicians are 'being inept at their chosen profession,' especially after giving you the excellence of care that our sleep center is well known to provide." I see. So your credentialed technicians aren't human? They never make mistakes? How lucky for you to have found the Land of Perfect People from which to pluck your employees! Sheesh. Lady, your assurances mean nothing.

So they're insinuating that I changed the "ramp" setting myself - to what end? To screw myself for an entire week by not getting the therapy I know I need? And for what reason? So I could accuse them of doing something they didn't do? And the purpose of that would be... what? It's as if they think I needed an excuse to fire them and had to fabricate a scenario (and torture myself in the process) to enable that action. Yeahrightsure. Anyone can fire a doctor anytime they want, and I was already headed in that direction before this autopap trial. As I posted somewhere upthread, I was willing to give this office a shot at helping me get the right kind of therapy when the Clinical Director recently gave me the impression that she would work with me towards reaching that goal. So yeah, I shot myself in the foot so I could fire my doctor. Makes sense to someone, I'm sure, but nobody that I know (or would want to know). Gahhh...

Apologies to all of you who are reading all this crap (unless, of course, you find it interesting and/or informative). I didn't intend to rant on and on here, but I guess I needed to get it off my chest, and I appreciate the opportunity to do so.

To any newbies who might be following along: Please take my experiences to heart and don't allow yourself to get caught up in the treatment merry-go-round I've been on for nearly 18 months now. Learn from my mistakes, read as much as you can (on this forum and elsewhere) about your diagnosis and proposed treatment plan, ask your questions, and arm yourself with solid information about the new path you're on. It's YOUR health, so be as involved in the treatment decision-making process as you can be. And if you don't feel your doctor is taking good care of you, FIND A NEW ONE, and do it long before you get to where I find myself at this point. (Better late than never, but better sooner than later.)

Whew. I feel better now. Good morning, all.

[BleepingBeauty]

What I find most impressive in this story it that after setting you up for a week of split nights that start with 2 hours of highly sub-optimal pressure, they discover this on the forum, and do not call you back to correct the setup, but rather trump up a story that you did not comply to therapy.

Amazing, isn't it? Apparently, they're of the opinion that their techs are infallible, so I guess it follows that I must have sabotaged this autopap trial. (To what end? Ya got me.)

Sounds to me like someone is running very scared -- any chance that the person who blew the setup is the one reading the fourm, and lying to their boss?

Could be they're still reading the forum, by the way.

O.

Oh, I have absolutely no doubt that they're still reading the forum (well, my posts, anyway). From their POV, I'm sure it's like a bad car wreck - you don't want to look, but you can't help yourself. I have mixed feelings about the tech involved; he's a nice kid, and I didn't intend for this to impact him personally by putting his job on the line. (I have no idea if he's suffered any consequences over this, btw. I thought maybe they'd reprimand him and/or insist on more training to be sure it never happens again.) But the attitude expressed in the letter indicates that nobody there did anything wrong, so who knows?

Of course, I don't know who from the office is reading these posts. Could be the tech involved, could be anyone else. But it doesn't matter. I'm not ashamed of anything I've written here, as I have nothing to hide (nor gain, for that matter) by posting about my experiences. I hope they're squirming, though, because their dismissing me as a patient is not the end of this affair. All in good time...

[BleepingBeauty]

Believe me, I wish someone had given me a heads-up early on, so I wouldn't have wasted all this time with unsuccessful treatment. I can only strive now to do that for others. But not to worry. It won't end there. I'm compiling the pertinent info to make myself heard on a larger scale and will take further action when I have everything organized.

What do you have in mind?

SAG

Well, since I'm convinced that they're still reading my messages here, I'd rather not go into any detail about that in a public post. When I get all my ducks in a row, I'll take the action I'm considering and will post about it after the fact.

I'll PM you with more info at some point soon, since I have a question you can probably answer for me. As always, TIA.

[StillAnotherGuest]

Well, "IMHO", SAG thinks you're starting to get a little berserk. Going from

...none of that matters. I no longer have to deal with him, nor him me. Right now, I just want to get on with my treatment plan and get rid of this bad taste in my mouth.

to

But not to worry. It won't end there. I'm compiling the pertinent info to make myself heard on a larger scale and will take further action when I have everything organized.

makes it seem like that anger's gonna eat you up from the inside out if you let it.

Anyway, I think before you do anything you need to get the rest of the missing puzzle pieces, like the latest results (consider this-- if the APAP just went to like 12 - 14 cmH2O and sits there all night and the AHI is < 5.0, you're kinda gonna look like a bonehead. BTW, hey doctor's office, where's my download?

Of the APAP reports you got, do you have any that look like what jules posted?

Can you get the graphics from the very first study, the split, where you were on ambient pressure? I think ambient study information is very important.

SAG

[Wulfman]

Bleeping,

From my readings and interpretations, it was apparent to me that you had NOT changed your settings......and that's why I listed the instructions so you could discover what they were.

I've always been mystified as to how a doctor's (or DME's) improper settings could not/would not harm (endanger) a patient, but when a patient changes settings for better therapy, then it becomes a "harmful" (danger) issue.

I'm also waiting (and waiting, and waiting) for someone to produce evidence that someone has actually been "harmed" by improper settings on a CPAP/APAP/Bi-Level machine......either by a medical professional or a patient/user. This includes "pressure-induced Central Apneas".
In my opinion, it's far worse therapy (but not necessarily to the point of "danger") to hand out an APAP set from 4 cm. to 20 cm. H2O. In other words, sub-optimal pressure settings would allow more obstructive apneas and desaturations to occur.

Don't let the anger take its toll. I can also speak from experience. After four years, I still want to kick the crap out of my doctors.....they missed "things" and over-prescribed my pressure.....but venting about it has helped.


Den

[BleepingBeauty]

Well, "IMHO", SAG thinks you're starting to get a little berserk. Going from

...none of that matters. I no longer have to deal with him, nor him me. Right now, I just want to get on with my treatment plan and get rid of this bad taste in my mouth.

to

But not to worry. It won't end there. I'm compiling the pertinent info to make myself heard on a larger scale and will take further action when I have everything organized.

makes it seem like that anger's gonna eat you up from the inside out if you let it.

Truth be told, I'm more angry with myself for letting things go for so long where this doctor's "care" is concerned. I should have dumped him a long time ago. As I posted earlier, I had confidence in the Clinical Director's claim that she would help me get on the right road with my therapy needs. Live and learn. But the anger isn't eating me up. I kicked myself in the butt for not acting sooner, when my suspicions first surfaced, but I'm on the right track now, so no more beating myself up over it. I'm optimistic about the prospects for the future. I still plan to deal with the past, but in due time. I think my priorities are in good order, but thanks for the concern.

Anyway, I think before you do anything you need to get the rest of the missing puzzle pieces, like the latest results (consider this-- if the APAP just went to like 12 - 14 cmH2O and sits there all night and the AHI is < 5.0, you're kinda gonna look like a bonehead. BTW, hey doctor's office, where's my download?

I agree. It'll take a little while to gather the missing info I need, so I'm biding my time. As to the results of this APAP trial, I have no doubt that the numbers will show why I felt as terrible as I did that whole week. How could they not, when this doctor has me prescribed at 14 cm of pressure and the machine was only blowing at 7 cm for two full hours every night? If the AHI is < 5.0, I'll eat my hat. I haven't felt so sleep-deprived since before I started therapy altogether.

Of the APAP reports you got, do you have any that look like what jules posted?

Yes. I uploaded three Sleep Therapy Long Term Trend reports (from my previous three APAP trials) and a Summary of Daily Details (from October '08) here: http://s675.photobucket.com/albums/vv12 ... 20Reports/. I also posted a Respiratory Graphic Summary Report from my 3/23/09 sleep study here: http://s675.photobucket.com/albums/vv12 ... %20Report/ and the Event Logs from my sleep studies from November and last month, which are here: http://s675.photobucket.com/albums/vv12 ... nt%20Logs/

I have Daily Details reports from the APAP trials (a total of 18 pages). I thought the Long Term Trend Reports would be sufficient, but if you want me to upload each of these pages, I will. Let me know.

Can you get the graphics from the very first study, the split, where you were on ambient pressure? I think ambient study information is very important.

SAG

Yes. I uploaded four pages of graphs from that study days ago. They're here: http://s675.photobucket.com/albums/vv12 ... 010-04-07/

[jules]

SAG wants to see the nightly detail graphs - goofproof calls them "daily's" - not compliance graphs

you need to find pages where they have just one night - pressure in the top graph, then events / flags in the middle graph and leaks in the bottom graph followed by a chart of pressures and event indices

look for pages that match this one - colors might be different for some parts - my Encore Pro is very old version - they will be middle numbered pages in the report

[StillAnotherGuest]

Right. As you can see, you got a bunch more info to deal with.

BTW, from your post on 4/17 you said

when I've used an AUTO machine on a trial basis. Included in each of these full reports are Compliance Information, Patterns of Use, Sleep Therapy Long Term Trend, Sleep Therapy Daily Details (for some, but not all trial days), and Summary of Compliance - All Data.
2007 - 11/26 through 12/13 - first AUTO machine trial (11 pages)
2008 - 2/18 through 3/6 - second AUTO machine trial (11 pages)
2008 - 10/17 through 10/20 - third AUTO machine trial (9 pages w/Summary of Daily Details included)

but it looks like 11-12/2007 and 2-3/2008 are plain 12's. Got the STDDs from 10/2008?

In re: the ambient portion of the split, those pages are mostly "tables"-- do you have one that looks like this one from 3/09, specifically with oximetry and respiratory events?

Like This

SAG

[StillAnotherGuest]

Did SAG say a bad thing?

did you say "BLEEP" ?????

No, I said to BB "2 of your APAPS weren't APAPS".

BTW, since I don't want to get to 1000, from now on I'm posting everything in here.

Hmmm. How am I going to be able to differentiate replies to other threads?

I wonder what's going to happen when there are so many graphs here that it needs to go to another page.

One good thing, when doing a search, there'll be a lot less posts to sift through.

But Gumby still wonders if SAG has ever figured out how much "23 sonometers" actually is? Moreover, what a "sonometer" is? Gumby thinks it may be a measure of attitude.

Right. A drive-by shooting blanks.

ps. Teller says bi

You have me at the advantage. Who's Teller?

In this case BB has a lot of leak issues and all those events corresponding to leak spikes (based on the limited resolution those graphs allow). It is a matter of which came first the leak or the event.

Or the accuracy of reporting the event. Or even if the patient is asleep or not. Or the effect of the pressure increase (although that's a trend and easy enough to spot).

Jules wonders if it is chicken soup or egg drop soup today.

BB has the cookbook. The new download and STDDs should shed some light on that.

I think it's a subplot to see if they actually show up.

BTW Jules wonders when SAG will officially hit 1000 posts as they know he has many posts as "guest" and under other nicks as they also does.

SAG will not hit 1000 posts. He (or the character) will either sit in this post till it explodes, find another one (he will turn into a virtual "hermit crab", finding somebody else's house and taking up residence), morph into Muffy or take the summer off (he really needs a vacation). Regardless, the 1000 post threshold is generating a kind of mid-life crisis for SAG, and maybe TNKOTB should take over anyway.

A SAGBTW, took 2 more cups of buckwheat hulls out of the Birkett Mills Pillow (I guess you really don't need much hull in there to achieve the "hull effect"). Now the SAG Head Angle has nearly no angle, which raises a good question-- what is the ideal (healthiest) angle for sleep? Does bending your neck at a 45-degree angle, as you might see with a big, fluffy pillow, create long-term issues? Is flatter better?

Also stopped at Agway on Saturday to look at mulch quality hulls. You know, the display in the store had a lot of foreign matter in it, but the actual bags in the yard looked very clean. I'm thinking one could simply get less expensive hull and pick it over and "triple clean" it yourself (I don't see "triple cleaning" buckwheat hulls as a highly technical procedure) as long as there are no pesticides, herbicides or fungus/mold/other wildlife in it.

Was it LBJ who said "Sunshine is THE best disinfectant"?

No, that was Timothy Leary.

For the buckwheat pillow update, it's going to be tough for SAG to come up with any data, objective or subjective. From a baseline that consists of a very short sleep latency, no recalled awakenings and arising after awakening (essentially immediately after final REM period), about the best he could hope for would be a draw, and that's basically where we are now. I guess you actually need something to fix before you try to fix it.

Which begs the question, what are the problems that buckwheat pillows could actually help? A subject that seems to come up most frequently is neck discomfort/pain, but a blanket claim of "buy a buckwheat pillow and your neck pain will be cured" belongs in the spam bucket.

Further, the principles and design of the buckwheat pillow (BP) would make one think that it is not CPAP user-friendly, since the semi-rigid wall of the recess created during BP adjustment would seem to create an obstruction to sideways movement and side-sleeping for those sporting a PAP interface.

With the BP seemingly adjusted for firmness with the removal of 6 cups of hulls, last night SAG tried the BP on top of a regular pillow, thus raising the overall height several inches and creating an interesting effect. The unsupported BP was much lower than what he was used to sleeping on, and an excellent rule of thumb is not not make wholesale changes to the sleep routine (lest it cease to be a "routine", and "if it ain't broke...").

Yo, GVD, are you around? What's the height of the combination pillow?

SAG

[jules]

did you say "BLEEP" ?????

[BleepingBeauty]

Bleeping,

From my readings and interpretations, it was apparent to me that you had NOT changed your settings......and that's why I listed the instructions so you could discover what they were.

Thanks, Den. I'd think anyone reading what I posted would know that, too. *shrug*

I've always been mystified as to how a doctor's (or DME's) improper settings could not/would not harm (endanger) a patient, but when a patient changes settings for better therapy, then it becomes a "harmful" (danger) issue.

Yeah, I find that more than a little disconcerting, myself.

I'm also waiting (and waiting, and waiting) for someone to produce evidence that someone has actually been "harmed" by improper settings on a CPAP/APAP/Bi-Level machine......either by a medical professional or a patient/user. This includes "pressure-induced Central Apneas".

In my opinion, it's far worse therapy (but not necessarily to the point of "danger") to hand out an APAP set from 4 cm. to 20 cm. H2O. In other words, sub-optimal pressure settings would allow more obstructive apneas and desaturations to occur.

I've read plenty of opinions here that agree with yours. And based on how I felt recently, I would agree that sub-optimal pressure settings DO allow more apneas and desaturations to occur. I'll be very interested to see the data, because I'm pretty sure it'll confirm that. We'll see...

Don't let the anger take its toll. I can also speak from experience. After four years, I still want to kick the crap out of my doctors.....they missed "things" and over-prescribed my pressure.....but venting about it has helped.

Den

Nah, I'm really not consumed by this. I have my moments, of course. It's annoying that the doctor's office is fabricating their claims but, since they're so easily disproven by my posts and the doctor's own records, they're not weighing on my mind. As "conflicts" go, this one's a piece o' cake.

Sorry you've had similar experiences and they still bug you, all these years later. But I understand that sentiment. And yes, venting definitely does help - especially when you have sympathetic ears, as we do here.

Thanks.