Oh, the naivete of a newbie...

With the recent discussion on the forum about keeping a sleep diary, I recalled that I kept one at the beginning of my CPAP journey (in late 2007) so that I could tell the doctor what I was experiencing early on in my treatment. (Didn't make any impression on him, but I saved it and reviewed it recently. It's an eye-opening experience to now look back at those very early days with a much more solid CPAP knowledge base behind me. Comparing what I knew then to what I know now, I realize just how naive I was about this treatment.)

A couple of things of note:

When I began, I was given a plain vanilla CPAP, without even a smart card in it, courtesy of my PCP's prescription. (Note that my PCP is totally clueless about sleep apnea.) Two weeks before my first appointment with a sleep doc, said sleep doc ordered a trial period with a recording CPAP so he'd have an idea of what was happening at home when I met with him in mid-December. In comparing my own sleep diary notes to the medical records I received from his office when we parted ways a couple of months ago, a couple of things glaringly pop out at me.

My own diary notes detail how tired I still was every day while using the machine. My first Encore report, with daily details from the second week of December 2007, show a still-high AHI (average of 28) and higher-than-average leak rates every single night. The doctor never mentioned the high leak rates to me, but they should have tipped him off that the other numbers weren't reliable data, and he should have helped me (or sent me back to the DME) to adjust my mask to make my therapy more effective.

My own sleep diary notes from my meeting with the doctor say: "Smart Card reports an AHI of 28, but the doc doesn’t know when they’re occurring; could be happening as I’m falling asleep. Doc prescribed me a machine with C-Flex and a smart card for permanent use so he can see what’s happening whenever I see him, but (the RT at DME) says it’s unlikely my insurance will be okay with that…"

Here's a good example of my daily details during that period. (Look at those really dense clusters and that leak rate! Holy cow.) I was using the Swift II mask back then, and my leak rate should have been around 33 at a pressure of 12.



I know there's limited info on daily detail reports (i.e., no graphs to reveal sleep stages, sleep position, etc.). But when I look at those daily detail reports now, I can see that the events were occurring all through the night, not at the beginning when I was going to sleep, nor immediately after a bathroom break, when I was going back to sleep. I'd told him I fall asleep within 15 minutes of hitting the pillow (there's a notation re: same in his notes), so I don't know why he was so clueless about the fact that I was having OAs all through the night.

The response from the DME isn't surprising now, considering what I've since learned about how this process works and what's really important to the DME (their bottom line, and NOT my successful therapy). If only I'd been more savvy about it all...

In mid-January, about a month later, one of the worker-bees at the DME called and said she'd "pulled a few strings" and got me the machine with the smart card and C-Flex that the doctor prescribed. I thanked her profusely at the time, thinking she'd gone beyond the call of duty on my behalf. (Little did I know.) The new machine was the same basic machine I had originally, but with C-Flex and compliance-only data capability. BFD! That's not what the doctor told me he was prescribing, but that's exactly how the scrip was written ("CPAP Unit: Respironics w/Smart Card & C-Flex to patient comfort"), and that's exactly what I got. The fact that the RT made such a big deal about the insurance probably not covering that scrip is laughable (now). And pffft! to the doctor for lying to me about what he was prescribing. Tell the patient what they want to hear, pat them on the head, and send them on their way.

I can look back now and see just how extremely naive I was to take what the DME and the doctor told me without question. What a dope I was.

I wish I'd kept the sleep diary for a lot longer than I did, but I realized early on that it was of no value to the doctor, so I stopped making the effort to record notes on a daily basis. But I'm glad I have those two months of notes, in any event. Live and learn...

I know there must be plenty of ethical, well meaning sleep disorder providers out there, however too often profit and greed take precedence over compassion. I was given a Resmed Escape (so named because it's a cheap 'Escape" for providers) at the start. I couldn't tolerate it, and after several months returned it and purchased an M-Series I quickly adapted to.

Georgio

BleepingBeauty wrote: but that's exactly how the scrip was written ("CPAP Unit: Respironics w/Smart Card & C-Flex to patient comfort"), and that's exactly what I got. The fact that the RT made such a big deal about the insurance probably not covering that scrip is laughable (now).
What a dope I was.
Live and learn...

BB, I was a dope.
My original Rx was for a cpap w/data card /cflex.....that's what I got...Mseries Plus.
It fills the Rx, but is worthless.


Thankfully for cpaptalk.com,
we are, infact,
living and learning.

You did well to dump that doc. People like that shouldn't keep patients for very long .....
Great post, educational and entertaining both. I would have been disturbed by it a lot more but after a week on this forum none of it really surprises me . You don't stay naive for long around here.
Both parties in a doctor-patient relationship have ongoing responsibilities - both of them. If I'm not getting what I expect, he or she can find some other sucker to impress.
Thanks for sharing.

Georgio wrote:I know there must be plenty of ethical, well meaning sleep disorder providers out there, however too often profit and greed take precedence over compassion. I was given a Resmed Escape (so named because it's a cheap 'Escape" for providers) at the start. I couldn't tolerate it, and after several months returned it and purchased an M-Series I quickly adapted to.

Georgio

Hi, Georgio.

I wish we had hard numbers on those statistics. I wonder just how many compassionate providers there are out there, considering all of the horror stories we hear about on this site (especially with regard to DMEs). You'd think the people in this field got into it in the first place because they wanted to help people. What happened to that kind of idealism?

carbonman wrote:
BB, I was a dope.
My original Rx was for a cpap w/data card /cflex.....that's what I got...Mseries Plus.
It fills the Rx, but is worthless.

That's the same machine I had, carbonman. I'm SO glad I found the deal on CL for my current machine not long ago. Should've done that ages ago, but I only found the forum a few months back. And boy, am I glad I did!

Thankfully for cpaptalk.com,
we are, infact,
living and learning.

I couldn't agree more.

Pneumonym wrote:You did well to dump that doc. People like that shouldn't keep patients for very long .....
Great post, educational and entertaining both. I would have been disturbed by it a lot more but after a week on this forum none of it really surprises me . You don't stay naive for long around here.
Both parties in a doctor-patient relationship have ongoing responsibilities - both of them. If I'm not getting what I expect, he or she can find some other sucker to impress.
Thanks for sharing.

Thanks, Pneumonym. If you have any interest in it, you can read about my poor experience with my ex-doctor in another (rather long) thread I posted a few months ago, shortly before we parted ways, here: viewtopic.php?f=1&t=41034&p=359770#p359741

The end of our doctor/patient relationship was rather comical (now that I'm looking back on it); at the time, I was totally flabbergasted by the behavior I was "treated" to.

I'm happy to see that, as a newbie who found this forum early on, you've already become quite savvy about your treatment needs and how to deal with your healthcare providers in this field. I started out with that "God" thing where doctors are concerned and questioned very little. But even when I did question aspects of my less-than-effective treatment, I was met with resistance. I put up with that b.s. for far too long, but at least I did learn from the experiences I've had.

FYI: Edited to change the link to my previous thread to remove the outlined-in-pink search references I used to find the thread (which I always find annoying).

Yea, I was given the "Plus" machine as my first machine. The DME really stressed that the "Plus" model had so much going for it and thus the reason for the "Plus" in the name!!!

Really laughable now in hindsight, but not funny when I was trying to get my prescribed machine. My script was written for an apap. I wonder how many in our community are trying to get their therapy working, are not feeling the results they should, all do to a bad DME here. I used a local company originally to keep my dollars in the community and they were like the Three Stooges and the Devil combined (although it wasn't comical in the beginning). I know they are still giving the "Plus" machine to anyone that walks in unsuspecting.

BB, Good post. Yep, I just went back and looked at my paperwork. We also got the Plus on 8/21/08,ordered by a nameless sleep dr who read the report and faxed the RX to the DME, then I thankfully found this forum, read my brains out, went straight to our internist who wrote a new script for an APAP exactly as I dictated it to him(I was even guessing at a setting range at that point, he was clueless), and we received the exchange from the DME on 9/4/08, scowling the whole time she was setting it up if I remember and trying to hide the setup process from me. Little did she know that I already learned how to change settings, ha,ha!. I still consider myself a newbie with lots to learn but not so naive anymore. Hopefully this will help others. Dori

DoriC wrote:BB, Good post. Yep, I just went back and looked at my paperwork. We also got the Plus on 8/21/08,ordered by a nameless sleep dr who read the report and faxed the RX to the DME, then I thankfully found this forum, read my brains out, went straight to our internist who wrote a new script for an APAP exactly as I dictated it to him(I was even guessing at a setting range at that point, he was clueless), and we received the exchange from the DME on 9/4/08, scowling the whole time she was setting it up if I remember and trying to hide the setup process from me. Little did she know that I already learned how to change settings, ha,ha!. I still consider myself a newbie with lots to learn but not so naive anymore. Hopefully this will help others. Dori

Thanks, Dori. Knowledge IS power - especially when it comes to our efforts to treat our sleep apnea when we have to deal with "professionals" who really don't seem to care about how we're doing with our therapy.

I've said it before, and I'll say it again: This place is invaluable, for newbies and experienced users alike. Any one of us can have problems crop up long after our therapy begins, and I trust the advice I get here more than anything I might hear from a doctor or a DME. Other users are far more forthcoming and willing to offer their assistance, IMO.

Thanks, Johnny, for helping so many here!

Physicians are just like any other professional. There are wonderful ones, good ones, indifferent ones, rather incompetent ones and downright rotten ones. Much the same as my own field. I've worked with a few docs, as patient and professionally as co-researcher, and I've chosen to go elsewhere a few times. I'm always amazed that anyone would presume it could be otherwise. Could it be the years of training - as if THAT demonstrated very much. It's a prerequisite, but that's about all those letters mean to me (regardless of institution).

Pneumonym wrote:Physicians are just like any other professional. There are wonderful ones, good ones, indifferent ones, rather incompetent ones and downright rotten ones.

No argument there.

I've chosen to go elsewhere a few times. I'm always amazed that anyone would presume it could be otherwise.

I didn't think I couldn't change sleep doctors, but living where I live (in the middle of nowhere) and having the insurance I have made my choice in the matter extremely limited. The new sleep doc I have is a two-hour ride from here which, although not impossible, is certainly not convenient. But ya do what ya gotta do...

Ouch. Tough spot to be in (lack of practical choice), never been there myself. I have read some (not yet all) of your remarkable "dr killer" thread and, may I say, you should be very proud of yourself, you are the very paragon. And not just because you write so vividly and well in such trying circumstances, I had to smile a few times in sympathy at your frustrations ..... I have the advantage of having spent as much time as the average doc in accumulating letters and will look them straight in the eye when I question their judgement, after carefully researching the subject and and perhaps asking some colleagues for an opinion. That's OK, they can do that to me if we're talking about interpreting biomarker data in oncology. If they do not show that they are really on their game and attentive to my needs (within reasonable bounds of course, the better docs are invariably very very busy), I will give them perhaps one other chance - and then I'll go elsewhere. Just make sure that you aren't misunderstanding something, get another opinion you can trust if possible, give the person every chance to defend his or her self - and then dump dump dump. Which you very nicely did, the time was ripe and life is short.

And please don't get me wrong, I don't enjoy second-guessing someone's professional opinion. But IMO it comes with the territory, they should have picked another profession if it makes them defensive to be questioned. It's a litmus test with me, to be candid.

Pneumonym wrote:Ouch. Tough spot to be in (lack of practical choice), never been there myself.

I lived in a fairly large city which is known for its stellar medical care, before moving across the country to this tiny little hamlet in Aridzona nearly seven years ago. So I was used to receiving above-average healthcare and had many healthcare options, and my experience here has been a rather rude awakening.

I have read some (not yet all) of your remarkable "dr killer" thread and, may I say, you should be very proud of yourself, you are the very paragon. And not just because you write so vividly and well in such trying circumstances, I had to smile a few times in sympathy at your frustrations .....

Thanks. It's a very long thread, so it may take a bit to read through it. But I think it's worth the effort. (If nothing else, you'll probably learn a lot via the responses I got from some of the most knowledgeable and helpful forum members here.)

I have the advantage of having spent as much time as the average doc in accumulating letters and will look them straight in the eye when I question their judgement, after carefully researching the subject and and perhaps asking some colleagues for an opinion. That's OK, they can do that to me if we're talking about interpreting biomarker data in oncology. If they do not show that they are really on their game and attentive to my needs (within reasonable bounds of course, the better docs are invariably very very busy), I will give them perhaps one other chance - and then I'll go elsewhere.

That IS a definite advantage you've got going for you. I'm just the average Jane, and my questioning of an almighty doctor's opinion has been, let's say, not welcome. *shrug* The more I learn here, the more informed I become, and that allows me to better advocate on my own behalf. I may not have the clout that someone with your background does when it comes to questioning "authority" in the medical field, but I'm just as able to walk away and seek assistance elsewhere when I feel I'm being treated poorly (in every sense of the word).

Just make sure that you aren't misunderstanding something, get another opinion you can trust if possible, give the person every chance to defend his or her self - and then dump dump dump. Which you very nicely did, the time was ripe and life is short.

I did wait too long to do something about the shabby treatment I was receiving, and I've kicked myself in the butt for that. But yes, life is short (even shorter when one is not getting proper treatment) and time is fleeting. Better late than never.

And please don't get me wrong, I don't enjoy second-guessing someone's professional opinion. But IMO it comes with the territory, they should have picked another profession if it makes them defensive to be questioned. It's a litmus test with me, to be candid.

I don't enjoy it, either. But if things aren't adding up or making sense, it's time to ask pointed questions and get answers that satisfy you. If you feel your concerns aren't being taken seriously, it's time to move on. I'm glad I finally did.