My Sleep Doc Pontificates

I was at my sleep doc for a follow up appointment. Been on CPAP for a little over 3 weeks. I have a REMStar Pro 2 with C-Flex / heated humid and smart card.

Anyway, 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." He claimed he was quoting the engineers from the companies that make the machine. I brought my card in and they could "only generate compliance data". 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" 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. If it is reliable and accurate, how do you know and why would he discourage me from buying the software and monitoring my own progress. He said some other things about APAP and Bi-Pap that go against much of the info I've read on this board. I think these people are helping me as I am beginning to feel better day by day. 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.

Opinions

Tim

From everything I have read here regarding self monitoring I think the best indicators of efficacious treatment are oximetry readings correlated with the software readings from the smartcard. If oxygenation is good and software reports bad I would distrust the reports. If oxygenation is bad and software reports bad I would say the reports can be trusted as indicators, notice I say "INDICATORS" of what needs to be corrected.

Now, how many of us have recording pulse oximeters? Not me for sure but will I pursue getting one? Very possibly but not absolutely so. My current machine, which is not the Pro 2, does not permit me to even dump anything useful from the card.

The biggest question I have is - is my pressure correct? I do not trust my 11/03 sleep study, it was a very haphazard affair but it does correspond pretty closely to a study I had done in 06/00. I had put on a lot of weight between the two though and have put on more since. I know that I won't get another study, unless I undergo any surgery, for another 3 years. Why am I questioning the pressure? Weight gain between the study and actual compliance almost 2 years later. Also a quick positive reponse followed by a tail-off and subsequent struggles. I know I have battled mouth leaks and think I have that under control so the only treatment related variable I have now (I am consistently compliant) is pressure. There are plenty of other variables - weight, arthritis, other imflammation, not enough exercise.

So, my opinion is, the self monitoring, as imperfect as it might be, can only help but it must be used with caution, good sense and connected up to personal experience and feeling. I suspect your Docs are unaware of the amount of experiential information you have access to on this forum and doubt your ability to use the software wisely and with the requisite grain of salt therefore they discourage it.

That is my $.02.

David

Anyway, 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."

I have wondered just how accurate the CPAP/BIPAPs are when attempting to measure our AHIs etc. We know they mis-record snores sometimes, so they might also mis-record apneas, etc.

My wish is that we patients/users had better access to the studies and specifications that could tell us how reliable the measurements really are. The manufacturers "hide the ball," supposedly so that we can't misuse it! I have a the ability to read and interpret this sort of information, if only I could FIND it. I am sure this is true of many other CPAP users. The UNINFORMED CPAP users are more likely to mess up their treatment than the informed ones!

I fully intend, tho, to KEEP USING the SmartCard data and the software. Even if the data are a bit "iffy," I think using them will be far better than NOT monitoring my therapy at all. (My sister <without the software> has been on the same 20 cm pressure for over a year, no follow-ups, despite a weight change. I wish she had the capacity to monitor her treatment, so she would know more about when she might need a change. She was wistful when she saw my software last weekend.)

Tim,

....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."

There MAY be some truth to this. On the other hand, if there wasn't a certain amount of accuracy and dependability, why would the companies build the technology into the machines? It's for SOMEBODY'S benefit in monitoring the patient's progress. If your doctor is through with you, who will know (or care) how you're doing? (besides how you "feel") Yes, how you feel is a reasonable indicator, but maybe you could feel BETTER (with a slightly different pressure setting or a different mask).

And he said, "It should match up to your sleep study titration"

How are you going to know?

So peeps, how reliable is the data and the analysis that I've seen with the graphs etc.

There can be things that affect the data, but my feeling is that it's relatively consistent with how it records information (since it's done by sensors and programs). Sure, there are things that can probably create "false" apneas, hypopneas and snores, but there are other things that it keeps track of (like mask leaks) that you probably wouldn't know about unless you see it on a printout.

Even if my AHI statistics were off by 50%, I'm still under the 5.0 that's considered "normal"

As to why he's discouraging you from being proactive.....I'm not sure.....could be the mentality of the profession. I also realize (from posts here) that there are doctors who DO encourage their patients to be proactive, or at least embrace it once they see the printouts.

Best wishes,

Den

Sleepless in St. Louis wrote:I brought my card in and they could "only generate compliance data". 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" He went on to show me my data from the sleep study, which looked really good once I was on the CPAP.

Well, let's see.... you take your Smart Card to the doctor's office and they tell you it could "only generate compliance data." Compliance being how many hours the machine was used. If the doctor or whomever at the doctor's office didn't know that the machine you are using (REMstar Pro 2) generates a LOT more info than just hours of use, well....

And what in the world kind of answer was "It should match up to your sleep study titration" when you asked how you'd know how effective your treatment is. ?? Did he mean that the machine's pressure should match the pressure they found to be effective at your sleep lab titration?

You used the right word in the title of your first post in this thread when you said the sleep doc pontificates. Hey, you're just a lowly patient, ya know. The doctor knows best! He even knows what kind of data your machine generates. Only compliance.

Did he mean that the machine's pressure should match the pressure they found to be effective at your sleep lab titration?

Yes, that is basically what he meant. He was saying that they had proven what the effective pressure would be to treat me, and that was what I was getting at home. Could that be true? Maybe.

[quote="Moogy"][quote]
I fully intend, tho, to KEEP USING the SmartCard data and the software. Even if the data are a bit "iffy," I think using them will be far better than NOT monitoring my therapy at all. (My sister <without the software> has been on the same 20 cm pressure for over a year, no follow-ups, despite a weight change. I wish she had the capacity to monitor her treatment, so she would know more about when she might need a change. She was wistful when she saw my software last weekend.)

Well, aren't we a bunch of doubting Thomas's today? First there was this by Aswab:

Aswab wrote:From everything I have read here regarding self monitoring I think the best indicators of efficacious treatment are oximetry readings correlated with the software readings from the smartcard. If oxygenation is good and software reports bad I would distrust the reports. If oxygenation is bad and software reports bad I would say the reports can be trusted as indicators, notice I say "INDICATORS" of what needs to be corrected.

And then this by Moogy:

Moogy wrote:I have wondered just how accurate the CPAP/BIPAPs are when attempting to measure our AHIs etc. We know they mis-record snores sometimes, so they might also mis-record apneas, etc.

My wish is that we patients/users had better access to the studies and specifications that could tell us how reliable the measurements really are.

Given a choice between taking with blind faith what a physician tells me, vs having measured data which I've taken with instruments in my direct control, I'll be glad to tell you which I think is more likely to be more accurate! Especially, since I've got two instruments telling the identical same story. And it's pretty much the same story every night, as it was last night - the oximetry data correlates perfectly with the Encore Pro results.





Worst oxygen desaturations I've had in a couple of weeks. Encore Pro shows significant apneas at all desat times. Let's see, do I believe the instruments? They're correlated, David! Looks like a no-brainer to me.

Regards,
Bill

Bill,

While you are showing off you pulse oximeter (I want) can you tell me if you have noticed any desat level while having one nostril is blocked? I've wondered if I would be better with a FF mask since one nostril is often blocked. I could tell if I had a pulse oximter, but I don't.

You could be real nice and trade her machines for a week, and then check out her data. Share the Wealth!

Probably I would do that, if she didn't live so far away...she was only here for a few days, and I didn't yet have my titration results, so I would not have known how to set her machine for my use. I guess we could have slept on my auto BIPAP in shifts![/quote]

NightHawkeye, I can see it, how ever some will never. They have bought into the system. This man has went to school 8 years more than we have, he's in debt to his eyeballs for the big house on the hill and the four car garage lifestyle, therefore he has to know more about what is happening to us than we do.

He doesn't have our problem, he sees us every 6 months to a year, he doesn't even know our names. But since he is the Doctor, we believe he has the best answer to correct our problem. He relies on what the sleep study tech data shows him, which may or may not have been taken correctly. Then he takes his best guess and sends you to the DME with no idea of what works best for you.

We live in these bodies, we better learn a little on how they work, We didn't even get a Owners Manuel for them. So we depend on the Dr's and Dme's to keep them running, and they don't drive them, not even around the block. I've always got the tools out, tweeking and tuning the machine for the best proformance, but I make sure I have the correct info and tools to do the job. I couldn't be a Class "A" Mechanic without them.

hecate wrote:While you are showing off you pulse oximeter (I want) can you tell me if you have noticed any desat level while having one nostril is blocked? I've wondered if I would be better with a FF mask since one nostril is often blocked. I could tell if I had a pulse oximter, but I don't.

Good question, Liz. I often do have one nostril blocked (either one). I can't tell that that affects desaturations one iota. What I have noticed though, but cannot really quantify, is that having both nostrils blocked does cause problems. (Don't laugh. I'm serious.) I noticed the effect early on in xPAP therapy, because when both nostrils restrict air enough, then I often continue to try to breathe through my nose, rather than just breathing through my mouth, and so I get desats. (pretty dumb, huh?) I really think that a part of my problem with apnea has been congestion. Not the whole problem, but certainly a part of it (which is why I religiously use the Grossan irrigator nightly).

The other thing I've noticed is that since I switched to the Swift my desats rarely drop below 95%. (Last night being probably the worst exception since I started using the Swift.) The change is obvious beginning the very first night I used the Swift all night. I can't really account for it, although I could bore you with speculation.

In my data I can't tell any difference between my Ultra Mirage full face mask and my Ultra Mirage nasal mask. Except for the times when I overtightened the FF mask, the two masks yield about the same results. Not saying they would be the same for you, but they were for me.

Regards,
Bill

Bill,

I have been reasonably confident in your reports from day one (my day one in reading you), and reasonably confident in the correlation. I just don't have equivalent data to report on for myself.

Without that personal data and experience I put in all that hedge language. Until I get a APAP I will not decide if I get an oximeter or not but it has been you, reporting your experience, that has me wanting both. I can only speculate in a manner that might let someone reach their own conclusions comfortably.

I do understand, to a certain extent, why Doctors might be skeptical of a patient's ability to monitor their own self-care if they don't really know how it might be done themselves. They know what RT's report to them. I think that they see the data and the stats but they don't know alot about how it's gathered and doubt that anyone other than their certified tech can get it or themselves can interpret it. 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. I hate to be such a cynic but I guess I am.

I hope sleepless in St. Louis got, or does get, what he is seeking from this thread.

My much firmer opinion is that we should take all steps we can to manage our own care because it sure seems the pros often don't have the time, resources or motivation.

David

hecate wrote:Bill,

While you are showing off you pulse oximeter (I want) can you tell me if you have noticed any desat level while having one nostril is blocked? I've wondered if I would be better with a FF mask since one nostril is often blocked. I could tell if I had a pulse oximter, but I don't.

It doesn't take a Pulse Oximeter to answer that, anything that interferes with our breathing freely lowers our O2 intake, I have blockage on the side that is down. if I turn over the other side blocks. To breath the best I have to sleep on my right side because my left nostril is more open. I have to use a FF Mask all the time, but this month I had my first cold with cpap, it had been a trial. My AHI has doubled this month due to the breathing problems. My O2 is only 92 awake.

Bill,

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

Moogy