DME says Not to look at SleepyHead!

[bv1800]

The RT is ignorant...

You've used the perfect description. I used to teach College Algebra at a very large community college (20K students). Each class of 30 students had 5-6 RT students. A high percentage of them needed to take College Algebra (same thing that you took in high school, just compressed into 1 semester, instead of a full year) multiple times to pass it. I definitely acknowledge that a large number of people are "math-phobic" so that's a contributing factor.

I don't say this to demean RT's but to illustrate that RT's are likely to be no better at interpreting data than the average user. While I use a brick, my RT recently sent me an APAP machine to do a 2 week at home titration study. Even though I told her that the 1st week of use had a VERY high degree of problems, like leaks (my nasal pillows were worn out and needed replacing and it took me several days to determine the cause), her recommended pressure was the 90th percentile pressure, from the report on both weeks of data. Had she examined the 2nd week only, she would have concluded that the recommended pressure should be 1.5-2.0 CM lower. Given the fact that I'm using a brick and the recommended pressure SHOULD have been in the 4.0-4.5 range, that 1.5 CM is a HUGE difference. She also know that 5.5-6.0 CM of pressure is a level where I get severe aerophagia symptoms.

I don't consider my RT to be incompetent. She's simply doesn't have a degree of comfort with data, is forced to revert to the standard reports that come from her SW and is not able to dig deeper. Given what I know of the people that I taught, she's a typical RT.

[chunkyfrog]

If any health professional has a problem with me seeing my data,
I will ask them if they also advocate I stop checking my glucose--
"Please speak into the microphone."

[jilliansue]

As to the chinstrap slipping, one simple fix I have used, which I learned here, was to sew a strip of velcro on the side of the strap that goes over your hair, it will grip the hair and help keep sliding straps in place. You probably don't need to line the entire surface with velcro, perhaps just a small strip, or maybe even some of those little squares or dots. It is the rough side of the velcro that should go against your hair.

Good for you for being informed. I just can't believe that we are expected by some in the medical profession to not be informed consumers and active in our own therapy. I have never even met my sleep doc. I live in a small town and had 2 sleep studies done in our local hospital by visiting sleep techs with a mobile setup. Then the data was analyzed and the reports written and sent to me and my family doc here in town and she wrote the script. She confessed she doesn't know much about the details of the treatment. The good thing about that is that she will write the prescription according to my wishes, within the parameters of the sleep doc's recommendation, I reckon.

[Semily]

"Please speak into the microphone."

LOL! Love this. At this moment, I am sitting on eternal hold waiting to speak to a billing agent with Apria. I can't help but wonder how they would react if when they answer the phone I say, "This call may be recorded for legal purposes."

[jilliansue]

I can't help but wonder how they would react if when they answer the phone I say, "This call may be recorded for legal purposes."

If you try it, let us know!

[Paul_H]

I am only 3 weeks into PAP and stopped by my DME which has treated me great up to this point. I wanted them to take a look at my card, mainly at my leakage data. I have tried 4 different FFM, and asked their opinion about using pillows or nasal mask with my high pressure. (I didn't tell them that I already had a pillow mask coming my way). She basically said that I need to wait for 30 days and then need to be seen by my doctor or sleep doctor and I just have to have the words CPAP in the discussion with the doctor. It doesn't have to have any meaning, just tell the doctor that I'm using it. I was told by the RT to stop looking at my sleepyhead data. That it wasn't important to learn what it all meant. She said that I would just drive myself crazy and it wasn't necessary. I was also told (about the mask) that she didn't know what else she could do. REALLY?

I am what you might call a global learner. I want and need to know what to do and the why behind it all. Just following the steps isn't enough for me and if you want to drive me crazy, keep all the behind the scenes from me. Now don't get any ideas, guys! BTW, I didn't follow her advice.

As others have said, that sounds crazy to me, not to get as informed as you can about your health situation. I've been doing this thing for 6 months now, so not a lot of experience, but I am learning. I confess I did obsess somewhat earlier on about my daily numbers, but that obsession is diminishing with the passage of time. Mainly, though, by lurking and occasionally posting in this newsgroup, and by studying the SleepyHead graphs, I've learned a whole lot about the nuances of CPAP therapy, and during the process have experimented with the settings on my machine to the extent that I've reduced my average AHI from around 5.0 to 2.5. I'm still working on getting it lower. As others will confirm, it's not a totally straightforward process, and there is a lot of trial and error involved. My main mistake in the past has been to be too impatient, and not giving new settings enough time to produce a trend that is consistent.

[archangle]

I find that odd but not surprising. I would hope a RT would want a patient to know how their therapy is working and to know what is going on. I can see them not wanting you to fiddle with setting, but if something it not working at least you can know by looking at the data.

Lots of possible reasons. The RT doesn't want to listen to a bunch of dumb questions. The RT doesn't want to take the time to answer smart questions. The RT doesn't want a patient who knows enough to realize the RT isn't doing his job or doesn't know his job. The RT doesn't want a patient who starts tinkering and messes things up. The RT is part of the medical mafia and wants to sell more in lab $leep Te$t$ and unnecessary doctor vi$it$.

[JimDrowsy]

It's sad that providers continue to push back against people learning things, although at this time, I hope that most doctors are more open-minded. One of the first times I ran into this attitude was when my kids were young, and taking IQ tests (they were both on the autistic spectrum). If you've never seen the WISC IQ test, there are a bunch of tests, which are grouped into "performance" and "verbal" groups. The actual IQ score is supposed to be the average of these two scores, which, in turn, come from a "magic score sheet". The actual questions and the "magic score sheet" are supposed to be secret, but the summary sheet with the subtest raw scores is not.

He had decided that parents, even ones with college degrees, were not capable of reading the "How to interpret the test" text book. Many other doctors involved in our kids care were more than willing to provide the scores to us.

In general, I find the attitude condescending. As many of you have said, you have a right to understand your care. I tend to discount tech-types (as in technician, not technical) with that attitude. It's not helpful to anyone.

[cathyf]

Years ago I read a story about a survey of doctors' "pet peeves". It was presented totally without irony. The top two peeves -- by a large margin --

1) Patients who research symptoms on the internet and come in and want to discuss the information.

2) Patients who get through the whole appointment and then at the very end they mention some really serious symptom.

My conclusion? They want us to be idiots when it is convenient for them, and well-informed when our ignorance would be inconvenient for them.

I've certainly played the game when it was convenient for me. Like asking questions that I full-well know the answer to. Have you ever noticed that when people talk about their doctors they say things like "he answers all my questions" You know, if I have a question I can look it up. What I want is a doctor who asks questions, and then listens to the answers! And asks follow-up questions based upon what say!

[Ogeo]

As to the chinstrap slipping, one simple fix I have used, which I learned here, was to sew a strip of velcro on the side of the strap that goes over your hair, it will grip the hair and help keep sliding straps in place. You probably don't need to line the entire surface with velcro, perhaps just a small strip, or maybe even some of those little squares or dots. It is the rough side of the velcro that should go against your hair.

I'll have to try this. Thanks for the idea!

Good for you for being informed. I just can't believe that we are expected by some in the medical profession to not be informed consumers and active in our own therapy. I have never even met my sleep doc. I live in a small town and had 2 sleep studies done in our local hospital by visiting sleep techs with a mobile setup. Then the data was analyzed and the reports written and sent to me and my family doc here in town and she wrote the script. She confessed she doesn't know much about the details of the treatment. The good thing about that is that she will write the prescription according to my wishes, within the parameters of the sleep doc's recommendation, I reckon.

I too, have never met my sleep doc and I too live in a small town. I had my sleep test and both titration studies down in another town's hospital. It was a nurse from the hospital that gave the tests. The tests results were sent to even another town where there is a sleep doctor. I go to see my town doctor for the first time on Monday for another issue unrelated to OSA. I'm going to talk to him then to find out if he wants me to make an appointment with him or the sleep doc after my 30 days for the compliance and if he is willing to write my prescription for supplies. My original Rx from the sleep doc is for the machine and mask and is for one year. I want a lifetime Rx for all supplies. Before I submitted this post, I was just going over my last titration study and saw that it said under suggestions that "I will see her in follow up as needed and in two months to document her compliance." I actually missed seeing this and if I had never asked for a copy of it, then I would never have known it at all. Interesting. I have never got a follow up call from the sleep doc to see how it is going and if I have any problems? WE MUST BE THE ONES IN CHARGE!

[bv1800]

Lots of possible reasons. The RT doesn't want to listen to a bunch of dumb questions. The RT doesn't want to take the time to answer smart questions. The RT doesn't want a patient who knows enough to realize the RT isn't doing his job or doesn't know his job. The RT doesn't want a patient who starts tinkering and messes things up. The RT is part of the medical mafia and wants to sell more in lab $leep Te$t$ and unnecessary doctor vi$it$.

You left out "RT isn't capable of answering questions".

I strongly suspect that the discussions and depth of analysis that occur in this forum far exceeds the abilities/knowledge of the average RT, that's employed by a DME.

[jnk...]

There are good RTs and bad RTs, just as there are good patients and bad patients.

Many here DO misuse their home-machine data by using it to self-diagnose sleep issues, when it is actually only meant to be used to see leak data and as trending data for noting changes.

RTs believe what they have been taught, and most of the egg-headed so-called experts on CPAP don't know their butts from a hole in the ground either. Even the scientists. So I don't blame the RTs for not knowing what we know.

I mean, what about this? To a professional researcher, a patient can be considered a successful CPAP user if the patient only uses CPAP on an average of around four hours a night on a certain number of nights. All of us here know that to be bunk. We would not consider that kind of usage to be truly using CPAP. It is a fine definition for defining who gets a machine paid for, maybe. But unless someone is using CPAP all night every night, we all know that he is not truly a successful CPAP user. Nevertheless, when experts try to research a problem related to OSA by comparing non-CPAP users to CPAP users, few studies are done comparing nonusers to people who use CPAP all night every night. So much of the so-called scientific literature attempting to illuminate the usefulness of PAP therapy is pretty useless on the subject, all in all.

To me THAT is a bigger issue than the RTs not knowing how valuable data is to us.

The RTs may be clueless. But so are many of the scientists. IMO. We know what we know. But we know many others don't know what we know and likely will never know what we know. We love them anyway. And laugh at them behind their backs, and shake our heads. But we don't let it upset us. Much. Or too often. OK, heck, I admit it, it makes me angry!

But hey, that's just me.