My Sleep Doc Pontificates

Aswab wrote:In my experience Doctors seem to be surprised that patients can be relatively intelligent in their own care. I think they see a lot of "stupid" behavior from otherwise smart people (I know that some of my own behavior could appear quite stupid to them). If they encourage this kind of self care and there is a "problem" there might be some liability on their part.

It's really a Catch-22 for 'em, though. So long as they continue to exercise tight control and act as ultimate authorities for all things medical, they're gonna continue to get hit with massive legal judgements. If they let loose, then the empire crumbles.

I think health savings accounts will force it anyway, though. I got stuck with mine a little over a year ago and my thinking on such things has changed quite a lot since then. My attitude is a tad different now that I'm spending money on health care out of my own pocket. I ask more questions, too. I've even got a bill from two months ago that's never gonna get paid either - ever. (Never should have been billed for it.)

But hey, what do I really know, anyway. I'm just a dumb schmuck with a computer occasionally connecting dots.

Regards,
Bill

Moogy wrote:Where does a person go to purchase an oximeter? Is it expensive? Sounds like a great tool!

A1. E-bay or medical equipment house

A2. Yes, about the same cost as CPAP/APAP
A3. Yes, I've certainly gotten my money's worth out of mine

Here's a recent thread dealing with pulse oximeters, Moogy.
viewtopic.php?t=7131

Regards,
Bill

Sleepless in St. Louis wrote:I asked him about the monitoring software and he said that "the technology was not quite there yet relative to the accuracy and dependability of the data that comes off the smart card."

The monitoring software IS looking at the data that comes off the smart card. Which tells me he doesn't even understand what he's talking about. Which also explains why his answer doesn't even make sense. It's easy to blow off something you don't really understand.

He claimed he was quoting the engineers from the companies that make the machine.

Translation: DON'T QUESTION MY AUTHORITY!
The answer fits the general motif of blowing smoke.
Ask him their names.
Ask if he could pick them out of a police lineup.
Was it a "SALES" engineer? *cough*

I brought my card in and they could "only generate compliance data".

Another reason to suspect that he doesn't even know the first thing about the software.

My question to him was "how do I know how effective my treatment is". And he said...

"It should match up to your sleep study titration"

Good general answer.

He went on to show me my data from the sleep study, which looked really good once I was on the CPAP. So peeps, how reliable is the data and the analysis that I've seen with the graphs etc.

Chances are the sleep study, the data card, the monitoring software, AND your subjective experience all agree that you are better off WITH the CPAP than you were without it.

A sleep study with 83 wires plugged into the coaxial socket on the back of your head will be more accurate and have waaaaay more data points than the data that is recorded on the data card.

On the other hand, the sleep study has a major disadvantage in that it only looks at your condition on a given night, under less-than-normal conditions. The card and the software track your breathing patterns continuously. And if you have an APAP, the machine is able to adapt and adjust to the variations in your breathing and what kind of a night you're having, something that straight CPAP is unable to do.

why would he discourage me from buying the software and monitoring my own progress.

In the olden days, it was known as a gee-oh-dee complex, rampant amonst old-school doctors. Still exists. It can get really messy when patients become knowledgeable about their own condition. <sarcasm>

He said some other things about APAP and Bi-Pap that go against much of the info I've read on this board.

Your doctor doesn't understand the card and the software, and probably doesn't understand these newfangled APAP / BiPAP gadgets, and the whiz-bangery graphical software that goes with it. (Does he have a cell phone?). It's hard to think of situations where an APAP would actually do a worse job of it, clinically. It's a little more expensive, and the profit margins are often actually less due to insurance restrictions. That may explain PART of their negativity.

I think these people are helping me as I am beginning to feel better day by day.

I'm glad you are tapped into "the system", and that you are getting help for your apnea. You deserve the best.

I just don't get why they are discouraging me from becoming more proactive with my treatment. It's not like I'm going to be going back to them every month to milk the cash cow. He said I'm pretty much done with them unless I have problems or don't get the improvement I'm looking for.

Ignore the negativity, YOU ARE IN CHARGE. Notice which way the $$$ flows. You are the boss, they work for YOU! And if they MUST know, advise them that you will be monitoring your situation on a daily basis and making adjustments accordingly. I would suggest get a copy of your CPAP prescription (while they can still find it) and keep it in a safe place.

Opinions?

I should mention that your doctor does otherwise seem like a really nice fellow, and I surmise that he truly wants you to have the best treatement and results for your condition. No reason to doubt that.

You folks have said it best. You might want to check for an upgrade in doctor or even a newer model. The sensors in the APAP's are just fine. Fact is some doctors even send patients home with an APAP to get a proper titration reading. That alone would tell me that they are consistent and accurate. I would even think that the FDA wouldn't approve these units if they were so inaccurate as he claims them to be. I'm still laughing at the fact that your doctor didn't know that the Respironics Pro 2 puts out the same data as the Auto. .

Thanks for all the responses. Interesting range of opinions from the cynical to the pragmatic. I was fence sitting about whether or not to buy a card reader and software. Honestly, nothing that I've read so far makes me feel any better about the utility of doing so. Has anyone at the company that markets the software done any analysis, correlations, or statistical study to verify what is actually happening during CPAP treatment vs. the data that is mined from the smartcard?

I mean the machine is basically an expensive air pump. I don't see how it can measure anything except changes in pressure during the night. How does anyone know how those changes correlate to what is actually happening to our bodies during the night? Without sensors to show oxygen levels, record actual snoring and Centrals, I don't see it. Let's keep the discussion going.

Actually you pose an interesting question. So far, in my perusals of the posts on this forum no one has ever explained how that information is gathered and reported to the software. I have not done a search in prior forum posts for that. I think that you are correct, without additional sensors it only has changes in pressures - amplitude and duration to determine what's what. So, I would guess that some sort of algorithm evaluate those changes determines what's what.

My thoughts are that this algorithm must be pretty good since anecdotal evidence indicates that people can correlate their physical responses to therapy, good and bad, to what the software reports. Even more interesting is Bill's (Nighthawkeye) evidence correlating the variations in the levels of his oxygenation saturation (by using his oximeter) to what the software reports.

I am not sure what more discussion would tell you, or us, except if someone can tell us exactly what the software is reporting on.

I guess if the reader and software don't make sense to you then I would not buy them. I don't think anyone is going to go out of their way to persuade you one way or the other.

David

Aswab wrote:I think that you are correct, without additional sensors it only has changes in pressures - amplitude and duration to determine what's what. So, I would guess that some sort of algorithm evaluate those changes determines what's what.

My thoughts are that this algorithm must be pretty good since anecdotal evidence indicates that people can correlate their physical responses to therapy, good and bad, to what the software reports.

Something like a Remstar or Resmed Autoset know the pressure and flow rate at any point in time, measured at the output of the machine. The PB Goodknight APAP is similar except they get a measure of pressure at the mask to go with airflow measured at the output of the machine. So the algorithms are based on whatever can be discerned from time-domain analysis of pressure and flow rate.

As you say, it can work pretty well. The reason some people find one algorithm works better than another or some people find they just aren't well served by an APAP mostly have to do with the fact that you can't perfectly analysis someone's breathing in real time with just those two parameters. Then again, even in a full-PSG sleep study there are things that can't be measured correctly because of the limitations of the instruments. Nothing in this world is perfect.

For my part, I'm actually amazed that APAP machines work as well as they do for as many people as they do. Just looking at the information they have to work with, I'd think they are having to do too much reading between the line (so to speak). But I've read the clinical trials and in fact they work really, really well for a huge portion of the OSA population. So there you have it, go figure.

Sleepless in St. Louis wrote:I mean the machine is basically an expensive air pump. I don't see how it can measure anything except changes in pressure during the night.

I think you've answered your own question, Sleepless. Apnea is a stoppage of airflow. The machines measure airflow.

IT'S A DIRECT MEASUREMENT OF APNEA!

In the engineering world, things don't get much simpler and direct than this. That's why the machines work as well as they do. Apnea is a stoppage of airflow. The machines measure airflow. The machines are directly measuring exactly the very thing they are trying to control. Did I mention that xPAP machines directly measure airflow?

Sleepless in St. Louis wrote:How does anyone know how those changes correlate to what is actually happening to our bodies during the night? Without sensors to show oxygen levels, record actual snoring and Centrals, I don't see it.

I showed the correlation in my own case earlier with oximeter data. Centrals are also measured, just the same as obstructive apneas. It's just that CPAP machines can't help resolve central apneas. If you're worried about centrals, then you need something other than a CPAP machine.

Regards,
Bill

Gee Bill, do xPAPs measure airflow?

I guess it don't get too much simpler than that.

The comic Non Sequitor has an occasional character named Mr. Obviousman. He emerges out of a mild and meek mannered gent whenver someone misses the obvious. I know myself, depending on circumstances, can both be Mr. Obviousman and be the object of Mr. Obviousman's wrath. The problem is that Mr. Obviousman is rarely appreciated for his good deed of pointing out the obvious. In one strip he ended up with a large plate of spaghetti dumped on his head while pointing out the obvious to a waitress.

Thanks for all your contributions.

David

I showed the correlation in my own case earlier with oximeter data. Centrals are also measured, just the same as obstructive apneas.

No offense Bill, but that is only one person, with one set of data and one set of equipment.

I'm not looking for anyone to convince me to use the data my machine generates via the smartcard. I'm looking for information to help me convince myself that it's a worthwhile use of my time and money. Again, so far I have not heard anything that proves that I would be measuring anything that I can use to my advantage to further my treatment and outcome except mostly anecdotal evidence.

Tim

Aswab wrote:The comic Non Sequitor has an occasional character named Mr. Obviousman.

Sorry if I offended, David. I was more trying to be humorous, really. Guess today's not a subtle day for me, but I'll shut up now.

EDIT: And then, of course, there are the times when even the obvious can't penetrate the skull.

Regards,
Bill <lurk mode ON>

OK,

Here's a question and one problem example:

How to determine if you are having leak problems? I have used a great deal of trial and error, and unsatisfactory result while doing so, guess at and then identify leaks. Mouth leaks, seal leaks, and leaks at the humidfier connection. I was guessing the entire time but, over 30+ days I finally determined them all and believe I resolved them. If I start feeling crummier that it seems I should I have to start the process all over again. I don't know if a leak alarm would have caught them all or if I would have even heard them with the leak alarm and I do not wish to enable that alarm for several personal reasons. This process can, and will, begin a new if I need to adopt a new mask. The software would have helped.

Without another sleep study how can I determine if I might be having a pressure problem? A question I face right now. I suspect my pressure may be too low. Without the software I face the same trial and error process.

I don't know how long you have been working with the xPAP for your own personal therapy but I do know, conclusively, after 45+ days I want more information and more control. There are just too many variables that can affect the efficacy of treatment to rely completely on trial and error. Bill's experience and the anecdotal evidence is enough for me to begin budgeting and working with my MDs, DME and Insurance to get more and better gear and tools.

For myself I'm done with this topic.

Thanks for bringing it up, you have made it much clearer in my own mind.

Regards

David

I'm with the swabbie. When I finally get my machine (today, I hope!) of course I'll look at the apnea counts if they're available but it's the leak data that seems crucial to me. Everything I've read indicates that if you're letting that air escape, the basic PAP effect will not be there to hold off apneas and such. I sure don't want to be putting up with a mask and all that pressure if it doesn't get a chance to keep me breathing steadily.

I wasn't upset, I was laughing and grateful. I should have put a smiley in there.

It was a big Duh! Of course the machine can measure airflow and interpret that in a variety of ways.

In my opinions we all need Mr. Obviousman in our lives occasionally and we all need to be aware than we can be him too. We also need to be aware that, in that role, we can get a plate of spaghetti dumped on us.

David

Sleepless in St. Louis wrote:

I showed the correlation in my own case earlier with oximeter data. Centrals are also measured, just the same as obstructive apneas.

No offense Bill, but that is only one person, with one set of data and one set of equipment.

I'm not looking for anyone to convince me to use the data my machine generates via the smartcard. I'm looking for information to help me convince myself that it's a worthwhile use of my time and money. Again, so far I have not heard anything that proves that I would be measuring anything that I can use to my advantage to further my treatment and outcome except mostly anecdotal evidence.

Tim

Sleeping in different positions may require different titration levels. In my sleep study I slept on my side because that was the only comfortable position I could find in that bed. At home i also sleep almost sitting up. I need a higher level for sleeping on my back. How did I know this because my software showed that while on my back I was at my maximum titration level for most of the time and according to the software my various events had increased.

I have since reduced it since in an upright position I apprently can't keep my mouth closed. My friends have been telling me this for years, but I need the software to tell me.

Liz