A Question re: my AUTOPAP Trial

StillAnotherGuest wrote:

BleepingBeauty wrote:They've been reading this forum ...

No.

Really?

Did you ask if they had any opinion on buckwheat hulls?

It would be a good idea to first differentiate if they maintain the land-based or seafaring pillow paradigm. The "nasal pillowists" may need to weigh in as well...


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On a serious note, I hope the DME didn't feel too offended. They are human too. However, BB's primary concern truly was and should continue to be her improved health. So please forge ahead, BB...

We look forward to seeing those reports.

StillAnotherGuest wrote:

BleepingBeauty wrote:They've been reading this forum ...

No.

Really?

Did you ask if they had any opinion on buckwheat hulls?

SAG

Wise guy. Why, I oughtta... nyuk nyuk nyuk

(Yes, I'm female and a long-time fan of The Three Stooges. Who'd a thunk THAT?)

-SWS wrote: On a serious note, I hope the DME didn't feel too offended. They are human too. However, BB's primary concern truly was and should continue to be her improved health. So please forge ahead, BB...

We look forward to seeing those reports.

Thanks, -SWS. (It was the doctor's office who dismissed me, not the DME. But as I said, they only beat me to the punch, so it's fine. We'll both be better off without the other.) I was willing to continue with them when I thought the Clinical Director was going to help me reach my goal of the right treatment, but that went out the window when she wrote the letter I was handed today. FYI, I'm the third person I know who's left this doctor's "care" (although the other two left of their own volition), so I'm not alone in my disappointment with him. Pfffft!

Yes, of course, my goal is and has been to get the right kind of therapy for my SDB problem(s). So yes, I will absolutely forge ahead. After so many months of frustration and less-than-adequate therapy, I'm more than ready to make some real progress.

I'll go through my records more thoroughly tomorrow, after I've had some real sleep and can better judge what to scan. I look forward to a nice, long, hopefully uninterrupted night of blissful therapy - even if it's not exactly what I need yet. At least it's THERAPY!

Thanks to all for your support and encouragement, which helps to keep me going. Hope everyone sleeps as well as I expect and hope to, starting in just a few minutes. Til the 'morrow, I bid you all a very good night!

BleepingBeauty wrote:In the meantime, I'm very much looking forward to sleeping with my trusty old CPAP tonight, with 14 cm of pressure all night, after the week of torture that's been imposed on me with this awful AutoPAP trial.

I'm too tired right now to go into many details, but there were no fireworks today. In fact, they beat me to the punch (da bastids! ) I was really looking forward to telling them what I think about their "care," but I guess they have a pretty good idea about that already! (Read on.)

I handed over the APAP and they handed me a letter, discontinuing their service to me as a health care provider. They've been reading this forum (HA! Infamy is mine, at last! ), and they're not too happy with what I've been saying about them. They made some claims in the letter that are just flat out untrue, citing posts of mine as saying one thing when they clearly say just the opposite (to anyone whose reading comprehension skills are up to par, anyway), stating that they've tried diligently to work with me to solve my compliance issues (which don't even exist, and they know it; I've used my machine every single night since I received it in 2007, and they have records to prove my compliance). But it was a nice CYA letter, as these things go. And it's just as well, since I was ready to fire him today, anyway.

OMG...that is funny!!!

I'm not laughing at you, BB, as I'm sure you know. And it really isn't "funny." My laughter was astonished laughter...

First, that someone in the doctor's office has been reading this message board

And second, that the reading culminated in the doc not giving you (and us!) the satisfaction of your firing him!

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

SAG wrote: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.

While that may or may not have been the rationale of whoever is wingin' those dials, I think any information has the potential of being helpful information.

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!"

Truly. I was about to post that when I yawned and went to bed. Most unlike me.

Wish I had posted. I could've change my nic to "rested witch". Or, sumpin' like that.

Anyway. This was spooky weird.

BB, I'm so glad to hear that you've located a new sleep doctor.

rested gal wrote: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!"

Truly. I was about to post that when I yawned and went to bed. Most unlike me.

Maybe



had snuck up behind you and whispered in your year "waaaiiit, RG.....don't post yet......"

On the other hand, it's kinda difficult for that babe to sneak around pretty much anywhere.

Hey, yo! Doctor's office! Can you email the whole download (export) to BB? I need to look for VB patterns (which, as you may know, may evolve into at least a rudimentary measure of wake analysis).

SAG

BTW, just to complete that thought from yesterday, SAG uses this reader for memory sticks (then you can look at your digital photos on any computer by reading the stick vs downloading the camera) and a generic flash drive (that "swing-out" feature struck me as helpful)(plus, it was on sale for $9.99)(OK, the only reason I got it was that it was on sale for $9.99).

SAG

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

BB, if you don't mind, I'm going to quote one of my own opinions from another thread:

Primate in another thread wrote:I think it's wise to not to be overly-complacent about trusting what either the doctors or message boards tell us. Human oversight is the common and prevailing denominator IMO. That, in turn, means it is wise to seek additional opinions---including message board opinions---when things aren't going well. But it is seldom wise to completely bypass the medical establishment when treatment is going poorly IMHO.

Since treatment is not going all that well for you, BB, I would encourage you to get with your new sleep doctor sooner rather than later. SAG's professional take in this thread will probably turn out to be indispensable as well.

Good morning, everyone.

I slept for almost 7 hours straight last night (which is longer than my norm lately) and woke up feeling a whole lot better than I have in the recent past. No headache, and some real rest. Ahhh, therapy...

RG, I'm glad you got a chuckle out of yesterday's (non-) event. Agreed, it was disappointing not to have the opportunity to verbally express myself, but as we now know, my opinion has been heard loud and clear by the recipient, anyway. It's all good.

-SWS, thanks for the link correction. I really need to get up to speed when it comes to technology. I feel like a dinosaur at times, with everything changing as quickly as it does these days. (No blog, no Facebook, Myspace, Twitter, etc. for me. I know I'm behind the times, but I'm comfortable where I am.) As to getting with the new doc asap, there's no argument here. As of late yesterday afternoon, the new doc's office hadn't yet received the referral from my PCP, although the PCP's office says it was faxed without incident first thing in the morning. Perhaps it's caught up in transit somewhere, so I'll check on the status of that this afternoon. If need be, my PCP will re-fax it today.

Anyway, I've had time this morning to go through my records more thoroughly. It's interesting to note that the clinical notes say "Her compliance curve is excellent," which clearly disputes what was written in my doctor's office dismissal letter, citing my compliance as an issue they've "tried diligently to work with you to solve..."

As to the reports I got copies of yesterday, I'll list what I have, and you can tell me what's of use to you.

From my most recent/fourth sleep study (my third titration) on 3/23/09:
Respiratory Graphic Summary Report (1 page)
Event log (1 page)

From my third sleep study (my second titration) on 11/12/08:
Event log (1 page)

I have five Compliance Details - Full Report documents. Two of them are just compliance reports, with minimal info on three pages, from my regular CPAP machine. The other three are much more detailed, consisting of all kinds of graphs and charts, from the three occasions 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)

Please let me know what you'd like to see, and I'll start scanning and uploading. TIA

BleepingBeauty wrote:It's interesting to note that the clinical notes say "Her compliance curve is excellent," which clearly disputes what was written in my doctor's office dismissal letter, citing my compliance as an issue they've "tried diligently to work with you to solve..."

Clearly your "Dear John" letter was not referring to your CPAP compliance. Rather, your bow-down-to-medical-nonsense compliance was just terrible!

Congratulations on making the correct choice regarding both compliance decisions!

-SWS wrote:

BleepingBeauty wrote:It's interesting to note that the clinical notes say "Her compliance curve is excellent," which clearly disputes what was written in my doctor's office dismissal letter, citing my compliance as an issue they've "tried diligently to work with you to solve..."

Clearly your "Dear John" letter was not referring to your CPAP compliance. Rather, your bow-down-to-medical-nonsense compliance was just terrible!

Congratulations on making the correct choice regarding both compliance decisions!

Oh, so that's what they meant. It all makes sense now. And thanks for the vote of confidence, -SWS!

Speaking of statements with two meanings: When I called it a "CYA" letter yesterday, I meant to convey "Cover Your Ass." Of course, C-YA fits nicely, too. (However it's interpreted, the result is the same, and it's good.)

I've uploaded the pages from my ex-doctor's file that I think are worth looking at. The Respiratory Graphic Summary Report from 3-23-09 can be found here: http://s675.photobucket.com/albums/vv12 ... %20Report/, the two Event Logs (11-12-08 and 3-23-09) are here: http://s675.photobucket.com/albums/vv12 ... nt%20Logs/, and the Summary/Therapy Long Term Trend Reports are here: http://s675.photobucket.com/albums/vv12 ... 20Reports/, for anyone who cares to comment and/or help me interpret the data.

Oh, and I have an appointment with my new doc in a few weeks. Yay!

ozij wrote:Right.
I'm lurking.
O.

Same here.
Glad to see the "breakup" was amicable.
I hope your new doctor does right by you and I'll be looking for your postings of any progress.

Den

Wulfman wrote:

ozij wrote:Right.
I'm lurking.
O.

Same here.
Glad to see the "breakup" was amicable.
I hope your new doctor does right by you and I'll be looking for your postings of any progress.

Den

Thanks, Den.

I'm really looking forward to seeing this new doctor. After so many months of getting nowhere fast (or slow, for that matter), I'm excited at the prospect of making some real progress with my therapy.

I should probably keep my optimism in check, since I haven't gotten anywhere yet. But I'm hearing Etta James in my head, singing, "At laaaaaaast..."

Stay tuned!

StillAnotherGuest wrote:

BleepingBeauty wrote:They've been reading this forum ...

No.
Really?
Did you ask if they had any opinion on buckwheat hulls?
SAG

lmao
So teach me, coach me. What is it I have to say to get my DME to fire me? Do I tell the truth or make up lies? Put me in coach.

BB think they are mad cuz they won't be able to get you to go for more money, I mean PSG's? When you are ready, you need to post the name of this snake oil place.

Speaking of buckwheat, where's he been?

GumbyCT wrote: Speaking of buckwheat, where's he been?

He is no longer buckwheat but instead he is "endangering the public health" it appears. At least that is what they called it when they arrested drunk students. Maybe he needs to go back and be a cat.

GumbyCT wrote:

StillAnotherGuest wrote:

BleepingBeauty wrote:They've been reading this forum ...

No.
Really?
Did you ask if they had any opinion on buckwheat hulls?
SAG

lmao
So teach me, coach me. What is it I have to say to get my DME to fire me? Do I tell the truth or make up lies? Put me in coach.

BB think they are mad cuz they won't be able to get you to go for more money, I mean PSG's? When you are ready, you need to post the name of this snake oil place.

Hi, Gumby. How's Pokey?

It was my doctor, not my DME, and I think he's just mad that I've been posting here about my frustration with him. (Oh, the affrontery!) Of course, I've never mentioned him (or even his location) by name, but I guess whoever at the office is reading this forum knows enough about the details in my posts (dates of my sleep studies, my location, etc.) that they pegged me as their unhappy patient. My nick probably helped, too, since I haven't been that shy about expressing myself in front of them. *shrug* That's okay. It's nice to know they're smart enough to pick up on it. Now, if they could just apply that level of attention to their patients...

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.

Regards.