Stop self adjusting your pressure.

jasper wrote:And lastly, why is the only follow-up I have gotten from my DME in 15 months been a recording telling me to call an 800 number... which by the way, is another recording I can grunt "yes" or "no" to (If I hadn't already hung up?)

Wait! Wait! Don't tell me! Apria, right? I got the same automated phone call 6 months and two days after my first visit with them. I answered "creatively," so as not to generate an automailing of something I didn't want--like the POS mask they gave six months before.

Doug.

KansasRT accidentally guested wrote:I have read this entire thread and I have to comment on a few things. Bear1-- I have to agree with you that when I first found thid forum I was shocked! I thought that all these people were nuts for changing their own pressures and taping their mouths closed.

LOL!! I can imagine the shock. I'm not an RT, but the first time I read about someone doing that (on another apnea message board, a long time ago) I was shocked, too. A few months after reading that and struggling to try to sleep with several different kinds of FF masks, and finding that several different kinds of chin straps did nothing to stop my mouth breathing at night... I did it. Taped. Instantly began FINALLY getting effective treatment with much more comfortable masks.

I understand why RTs can't recommend taping, even if you thought a particular person would be safe doing that. I'm glad you do recommend this site to your patients. Maybe there are some closet-tapers in Kansas now.

KansasRT wrote:I have said this before and I will repeat it here again. None of you on this forum are like 90 % of the patients that I see or that I bet Bear1 sees. Most could care less about being proactive in their treatment. I have had more than one patient say, " Forget about all the buttons, All I want to know how to do is turn it on."

I believe that. Among the ten or so people in my town that I found out were on cpap, only one has been the least bit interested in finding out the kinds of things we discuss on this message board, and taking some control of his own treatment, using software, etc. The other nine aren't the least bit interested in anything other than knowing where the "On" button is on their machines. Most of those don't use their machines much.

Recently I downloaded the Smart Card (without erasing it) for one who has been sticking with it, using just the "On" button. She had almost a solid black line of Large Leak across every night of the detailed data from her machine. She's one of the few that had been using her machine almost every night for three years.

I asked her if her DME had ever asked to see the card from her machine. "No."

I asked her if her DME had ever talked to her about mask or mouth air leaks. "No."

I asked her, "Have you felt air leaks or been waked up by leaks or loud gushing air sounds?"
"I used to."

"Did you call the place that gave you your mask and tell them about the leaks?
"Yes, they said that happens sometimes and to tighten the straps more."

"Did they ever call you back to see how you were doing?"
"No."

"Have you felt better since you started using the machine?"
"Not really."

A few days later I gave her an extra mask I had and a leg cut off a pair of tights, and helped her fix the air hose overhead.

Downloaded her card again. Beautiful!!!!!

Without telling her what the data results were, I asked her, "Feeling any better?"
"I'm not sure, but I think maybe so. It's a little easier to get up in the mornings."

Small steps.

Where was her DME for the past three years? Geeze.

I've said this before, KansasRT, and will say it again. You're one of the good'uns. You would have been helping that lady all along.

We really do appreciate health care professionals like you who take the time to try to understand viewpoints that fly every which way on this board. Thanks, KansasRT for continuing to post here. You help so many.

Did you move to Kansas from Illinois, by chance? You remind me so much of another RT I had a lot of respect for and enjoyed reading her posts. She was a good'un, too.

rested gal wrote:

KansasRT accidentally guested wrote:I have read this entire thread and I have to comment on a few things. Bear1-- I have to agree with you that when I first found thid forum I was shocked! I thought that all these people were nuts for changing their own pressures and taping their mouths closed.

LOL!! I can imagine the shock. I'm not an RT, but the first time I read about someone doing that (on another apnea message board, a long time ago) I was shocked, too. A few months after reading that and struggling to try to sleep with several different kinds of FF masks, and finding that several different kinds of chin straps did nothing to stop my mouth breathing at night... I did it. Taped. Instantly began FINALLY getting effective treatment with much more comfortable masks.

Same here - though I didn't go through all those other attempts. I thought they were nuts for taping, real weidos. It took me 8 months to decide to try - and no doubt one of the reasons was that I had learned to know and trust the people posting, and discovered they were anything but nuts, weirdos, and the like.

KansasRT, you are a gem.

Did you move to Kansas from Illinois, by chance? You remind me so much of another RT I had a lot of respect for and enjoyed reading her posts. She was a good'un, too.

Good one, RG, as is that story. Yep. I miss her too.
O.

LyleHaze wrote:If you're still interested in damage control, you might want to change the thread title (if possible ??) It does have a knack for raising the hair on a few necks.

Excellent idea. To something like "Shortcomings of Software Analysis" or "Pitfalls of Relying on Limited-Channel Data Acquisition". Then present your material.

bear1mdr wrote:So the question still remains, why is this kind of software not intended for the end-user?

This is fun, anyone else care to venture a guess?

Oh, what the heck, I'll give it a shot.

1. There is no standard, or even an understanding, of the algorithms between machines. This has been shown in numerous comparison studies, such as

The Limitations of Flow Limitations

If the patient's SDB subset didn't match their machine forte, then the data results could be very misleading, so you can't rubber-stamp data interpretation with an across-the-board "AHI < whatever is good".

2. The Standard of Practice requires that any automatic scoring result needs at least some sort of visual confirmation (looking at the actual waveform) to confirm that the data is being reported correctly. A great example of this would be a pattern of rhythmic sleep disturbances such as PLMs that creates a variation in respiration that could be interpreted by the machine as malicious respiratory events. Or, of course, central events that are often misinterpreted, if identified at all, either directly or indirectly, by all of them.

3. However, Standards of Practice also say that if you have a pretty good idea of what you're doing, then an APAP can be a perfectly legitimate treatment modality. From the AASM:

SLEEP, Vol. 25, No. 2, 2002 145 Practice Parameter—Littner et al

Once an initial successful attended CPAP or APAP titration has been determined by polysomnography, certain APAP devices may be used in the self-adjusting mode for unattended treatment of patients with OSA.
One potential use of APAP is to treat patients with OSA on a long-term basis. Based on Level I and II and Grade A and B evidence, APAP devices using methods that involve snoring, apnea or hypopnea monitoring by airflow, airflow against time, or impedance by the forced oscillation technique may effectively adjust pressures to reduce sleep-disordered breathing events to the same extent as standard CPAP titration. Current Level I and II and Grade A and B evidence is specific to each device, including current software and device version. Caution should be exercised in selecting a particular device for use. Since the initial CPAP or APAP titration is attended, other issues such as mask fit, mask leak, and transient hypoxemia can be identified and managed at the time of titration.

4. Unfortunately, inconsistencies in the System allow improper interpretation of the data and failure to follow-up in many cases.

I also understand the frustration knowing what it takes to properly diagnose and treat sleep disorders and the ability of the status quo (including, for that matter, forum advice, there has been more than one "Whoops!" or question left on the table) to provide that.

I just had a funny thought-- "Forums are part of the system". What was that movie (early Patrick Swayze) where the Revolutionaries became the System?
SAG

FINALLY, I get to give an answer about something I know.

"Red Dawn" or maybe some other movie.

Best regards,

Fred

Daffney_Gillfin wrote:

rooster wrote:
You are using the old "I have PMs that warn me that he is unstable and should be avoided at all costs" tactic.

Is that equivalent to "The Lurkers Support Me in Email"?
http://www.lspace.org/fandom/filks/genf ... email.html

I like this thread. Thanks for starting it bear and welcome aboard.

Thanks for posting that link Daffney. It is so cute I am going to post the text here:

TTTO "The French Are Coming to Get Us", Mitch Ben

Now on this noble newsgroup I've come lurching into view,
And clearly I have caused a stir, top-posting as I do;
I only had two reboots with my disc from AOL,
Then I plugged into my WebTV, and posted here as well...

Yes, the lurkers support me in email
With gusto and vigour and vim
And so does the Pope and the President, and
My invisible weasel called Jim;
I'm amazed at this Internet thingie,
I've been typing so hard I've got cramp,
But I've only just worked out what "posts" are,
And tomorrow I'll take off the stamp..

Now though I haven't read the FAQs, I feel I must protest
At lectures on Good Form from those who think they know the best -
It's *easy* to reply to text the higher up you go,
And that dear man, Mr. H!pcr!me, taught me everything I know...

Yes, the lurkers support me in email,
And they're sure to back up what I post,
But they're far too scared to admit it,
Since the flamers here char them to toast...
The lurkers support me in email,
And I *do* know about netiquette,
I can prove that my sig looks fine fifty lines big,
You should see all the fan mail I get...

Yes, the lurkers support me in email,
And the Warlords are marching as well,
And B1FF likes me, and so does Free Porno,
I've got personal mails - I can tell;
And they're all writing to net-abuse.usenet
To complain about how you behaved;
All my Internet troops will lay siege to your group
So not one little post will be saved.

You're all doomed if you don't pay attention
'Cos I am the one who knows best,
And I don't care I'm posting in HTML
'Cos I'm posting through Outlook Express!

Happy whatever-it-is of September, people.

jasper wrote:Amen to all of that - whew!

I just wonder about a few things:

How can definitive test results be gotten from a study where I HAD to lie on my back, thus exacerbating my OSA?

Why did the RT send me home with an APAP for 6 weeks to determine what my pressure should be if APAPs and their software are so unreliable and unuseful when in fact the PSG was unable to give a reliable result?

How am I supposed to control mouth breathing, when a ff mask does not work for me, a chin strap was a disaster, and I've been only partially successful in training myself to nose breathe? Ok, I know, I know, that's been asked and (not) answered...

When I finally got a prescription from my sleep doc for an APAP machine, why in the world would the prescription have been written for 4-20 cm, when my fixed CPAP pressure for a year had been 14? Note, I immediately reset it to 10-18.

Why shouldn't my DME have even know what Aflex was when I asked for it? Give 'em credit, at least they sat down on the spot and Googled it.

And lastly, why is the only follow-up I have gotten from my DME in 15 months been a recording telling me to call an 800 number... which by the way, is another recording I can grunt "yes" or "no" to (If I hadn't already hung up?)

Just wondering... I don't guess there are answers to all of these points..

But, THANK GOD for this forum. I'm home!!

Hi, I'll take a stab at these questions!

It's not exacerbating your OSA to have you sleep on your back, if you condition yourself to not sleep on your back for (insert reason here which may really be severe OSA), is it exacerbating your OSA to see how you sleep supine?

Without seeing your study I have no idea, but did your RT send you home with an APAP after titration/split night results? If the APAP and study showed similar pressures, that would seem a good way for checks and balances, but in no way is that giving the APAP/software the sole responsibility for your RX.

Having not seen what you have or have not tried, I'm not in a position to comment on your mask selection or taping practices.

As for your DME, I got nuthin...