What Download Data The Sleep Doc Wants To See

[Slinky]

So let's see if I can post more than 3 lines today. Was in to see my sleep pulmo last week. More as a pulmo than as a sleep doctor. I asked if he wanted a download of my PAP data and he said yes so I gave his staff my data card to download. He glanced over the one page printout but made no comments.

I had reason to call his office a couple of days later to talk to one of his staff who does the downloads - and learned more from her than I have from him!!! This time my data was from the new PR S1 BPAP Auto. I have trouble doing a download from a data card every time his office does a download for me. This time was no exception. If most all sleep doctors do as he does no wonder they often haven't a clue to how well we are really doing or what problems we may be having!!!!

The only Encore data they download is the Therapy Summary Data Page. And the Summary Data is for the entire period since your last appointment w/them. Unless occurring for a long period of time any current problems you are having are lost in the data averages over such a long period - unless your last visit was recent.

There's no breakdown on Centrals, Obstructive and Hypopneas. Only total AHI. There's no reporting of Respiratory Effort, Vibratory Snore, Flow Limitation. W/the BPAP Auto as long as one doesn't change the Maximum IPAP pressure set there is no way this page will clue him in on whether one changed the EPAP or IPAP pressure.

I am assuming w/the Resmeds the only data download page that most sleep doctors want to see if the Statistics page. Its been awhile so I'll have to go back to one to refresh my memory on just what data is included on it.

[avi123]

Hi,

In my case my MD wants to see NONE downloaded data from my APAP. Only wants to know my feeling and my Epworth sleep score. He ( has MDs in both Internal medicine and pneumatology ) says that all data, except time, from home CPAPs are bogus b/c it depends on Flow only. If anything wrong then a new PSG should be in order.

After almost a year CPAPing and seeing my daily ResScan graphs, I do agree with him.

[Perrybucsdad]

The only thing my doc has wanted to know (and he asked me that) was "what is your AHI been lately?" My question back to him was "How do you define lately?"

He didn't look at any of the data. All I can say is thank God for this group as that is where all my help has come in adjusting to where I should be.

John

[Mary Z]

My doc was interested in AHI and leak data, but I'm sure he also looked at compliance. Since compliance was always perfect we didn't talk about that. He also only looked at the ResScan summary page.

[Slinky]

I don't totally disagree w/your doctor, Avi - BUT - I do think that these fully data capable xPAPs DO provide valuable information via the TRENDs they can document that a "one night stand" at the sleep lab CAN'T. Personally, I think the data from both the PSGs and the xPAPs are complimentary and of value.

But - what the hay - I'm "just" a patient.

Aw, hail, just because I'm a woman and can not stand to not get the last word in ..... the data from a PSG is only as good as the tech conducting the PSG - and maybe even only as good as the tech doing the scoring 'cause I don't think many sleep docs do more than a cursory glance at the data before signing off on the tech's scoring. And if the PSG isn't conducted well and/or correctly the scoring might not be worth diddley-squat either.

[LittleRedTruck]

What Ive found is neither the DR or RT who downloaded my card to Resscan knew how to read the charts produced. All they wanted to see was a summary report for a month or two, showing Ahi and compliance ! Dan

[rested gal]

In my case my MD wants to see NONE downloaded data from my APAP. Only wants to know my feeling and my Epworth sleep score. He ( has MDs in both Internal medicine and pneumatology ) says that all data, except time, from home CPAPs are bogus b/c it depends on Flow only. If anything wrong then a new PSG should be in order.

I don't have "MDs" in anything, but if any MD says "all data, except time, from home CPAPs are bogus b/c it depends on Flow only", I strongly disagree. A very important "Flow only" item of information the home CPAP machine can show is LEAK rate. A massive leak rate can be an indication of mouth breathing (if not using a full face mask) or of a mask leaking way too much. If the doctor (or whomever he depends on to look at downloaded data) does not even glance at ANYthing except "time" (hours of use), well, that's a heckuva poor way to check how a person's cpap therapy is going... imho.

Massive leaks send the pressurized air out into the bedroom instead of keeping the pressurized air going where it's supposed to be going -- to hold the airway open.

If the CPAP therapy is compromised by massive leaks making the therapy be like getting practically NO cpap therapy at all much of the time, it wouldn't be surprising if the person goes into the doctor's appointment saying, "I don't feel better." And his Epworth sleepiness score was still too high.

So, without knowing one thing about whether massive leaks might be rendering the cpap therapy next to useless, the doctor would order a whole new PSG sleep study?

Of course an attended PSG sleep study gives FAR more data than we get from home CPAP machines. But that doesn't mean there is NO data from the machines other than "time", that can give important indications of what might need to be worked on to optimize the CPAP therapy. Without the need for another full PSG study.

[chunkyfrog]

I really hate it when the medical professionals get 'dumbed down'--like it's too much trouble to keep up with the technology!

[Lizzzabeth]

I had my first 30 day follow up today. I was not instructed to bring anything, but I had been keeping an Excel log of some sleep quality data including hours of usage, AHI, Leak, and a subjective measure of quality and daytime sleepiness. The PA was pleasantly surprised==she said she can 't remember anyone bringing her such a report before. Never asked for my datacard (which was in my purse) and didn't keep a copy of the log.

Now in her defense, it was obviously going to be boring data. My therapy is apparently textbook success--0 or 0.1 AHI and 0 Leaks most nights (at least since I switched to the SwiftFX). She sent me on my way with a pat on the back and told me to check in again next year (unless I had a problem or question of course).

The one bit of advice I found a little surprising was "If your symptoms return and you find yourself sleepy while driving, pull over and call us". Unless they're planning to drive out and give me a lift home, I can't imagine why that would be helpful or necessary!

[robysue]

In my case my MD wants to see NONE downloaded data from my APAP. Only wants to know my feeling and my Epworth sleep score. He ( has MDs in both Internal medicine and pneumatology ) says that all data, except time, from home CPAPs are bogus b/c it depends on Flow only. If anything wrong then a new PSG should be in order.

And how many PSG's would he order if month after month the answer to "How are you feeling?" is "Lousier than when I started this stuff" and month after month the Epworth score stays above 12 even though the Epworth score before starting CPAP was a mere 5 or 6?

In the last 14 months I've had 4 PSGs and at least a dozen appointments with two different sleep docs (total of 4 appointments) and their PAs (at least 8 or 9 more appointments) to discuss my problems in making this crazy therapy work. And I'm still not consistently feeling any better. (I was feeling better most days back in August and early Sept, but not any more these last two or three weeks ...)

So seriously, how long does your doc "wait" before ordering a new PSG? And what happens when adjustments based on that PSG don't lead to any real improvement?

[avi123]

In my case my MD wants to see NONE downloaded data from my APAP. Only wants to know my feeling and my Epworth sleep score. He ( has MDs in both Internal medicine and pneumatology ) says that all data, except time, from home CPAPs are bogus b/c it depends on Flow only. If anything wrong then a new PSG should be in order.

I don't have "MDs" in anything, but if any MD says "all data, except time, from home CPAPs are bogus b/c it depends on Flow only", I strongly disagree. A very important "Flow only" item of information the home CPAP machine can show is LEAK rate. A massive leak rate can be an indication of mouth breathing (if not using a full face mask) or of a mask leaking way too much. If the doctor (or whomever he depends on to look at downloaded data) does not even glance at ANYthing except "time" (hours of use), well, that's a heckuva poor way to check how a person's cpap therapy is going... imho.

Massive leaks send the pressurized air out into the bedroom instead of keeping the pressurized air going where it's supposed to be going -- to hold the airway open.

If the CPAP therapy is compromised by massive leaks making the therapy be like getting practically NO cpap therapy at all much of the time, it wouldn't be surprising if the person goes into the doctor's appointment saying, "I don't feel better." And his Epworth sleepiness score was still too high.

So, without knowing one thing about whether massive leaks might be rendering the cpap therapy next to useless, the doctor would order a whole new PSG sleep study?

Of course an attended PSG sleep study gives FAR more data than we get from home CPAP machines. But that doesn't mean there is NO data from the machines other than "time", that can give important indications of what might need to be worked on to optimize the CPAP therapy. Without the need for another full PSG study.

OK RG, I should have added LEAK to TIME and use another word instead of "bogus". But what about the rest of stuff such as accuracy of events, and therefore their usefullness, etc.? Reminding you of your own post:

Let me find it first.

And Slinky, you mentioned TRENDINESS (is it Jeff's word?)

Please look at this six month of daily data and tell me if you can find a TREND between AHI and Pressure:

To come

p.s. hey, a good MD's time costs lots of money. In my area (except at Duke Medical Center) good MDs stated to call themselves "Consultants", stopped being Medicare provider, and charge me about 25% more than Medicare top prices IN CASH. Do you expect them to sit down and go over your endless XPAP data? Forget it! Only the lousy doctors will continue to lose money if Medicare continues as is.

[robysue]

Lizzzabeth,

Congrats on having stuff turn out so well so quickly. If only we were all so lucky. Maybe then the long and loud complaints about how we get treated by the sleep medicine industrial complex would cease to be so loud.

The one bit of advice I found a little surprising was "If your symptoms return and you find yourself sleepy while driving, pull over and call us". Unless they're planning to drive out and give me a lift home, I can't imagine why that would be helpful or necessary!

I can't tell you how many times I've been told (sometimes multiple times in one meeting) about "don't drive if you find yourself getting sleepy while driving." I NEVER got sleepy while driving pre-CPAP. And this has been a constant, on-going battle for me since Sept. 23, 2010. And like the vast majority of Americans, I have to drive---to work each and every day. I've had to become more and more dependent on hubby to drive me places this past year. And it's all because of a machine that is supposed to make me sleep better and make me feel better and make me more alert in the day.

And in all this time, not a single sleep doc or PA has ever really taken more than a casual glance at the efficacy data.

And they continue to claim my problems are caused by leaks: But my leak line is flat and at or below the expected intentional leak rate for my mask night after night after night after night all night long. So I don't really think the problem is leaks.

Or they say my problems are caused by pulling the mask off in my sleep: But neither I nor my hubby has ever woken up to find me with the mask NOT on my face. And, of course, those pesky little leak lines are flat and are at my expected intentional leak rate night after night after night all night long. Since I don't have "AUTO OFF" turned on, you'd think if I took the mask off, there would be some evidence in the leak line, wouldn't you?

Or they admit, my problem is likely because I'm having difficulty sleeping more than 4.5 to 5.5 hours each night----all of it with the mask on. But they have no useful advice on how to increase that time. And don't seem to be interested in actually coming up with any ideas other than sleeping pills (which I tried and had less than a successful experience with.)

So I'm leaving now to go driving across town to teach my night class. And yes, last night was a bad one: Took me close to 20 minutes to get to sleep; I woke up something like 5 times, including one longish 20-30 minute restless period in the middle of the night; I clocked about 5.75 hours on the machine, but probably got no more than about 4.5 hours of sleep; and had a nasty high AHI = 4 to boot. So, yeah, I'll be driving while sleepy. I don't have much choice since I have to use the d*m machine and once again I'm in a horrible pattern of "can't sleep with it" and "can't/shouldn't sleep with out it."

[Lizzzabeth]

Robysue

Doesn't seem like it takes an MD to figure out that 4-1/2 hours each night would leave you feeling worn out--even if you had 0 AHI and 0 leaks.

I was lucky to have a great sleep tech do the titration (second night of titration) and come across the right settings for me. My friend Millie can't get past 3 hours per night (different sleep lab). She has 3 different doctors all following her progress and not giving her much help. The best thing my doctor did for me was direct me to Chelsea (there were 3 choices) and call ahead to make sure Vicki would be on duty for the first and third studies (the second study (the disaster night) was scheduled without her input).

I hope you find answers and can get restorative sleep.

[fuzzy96]

i've been suprised that my dme sent me a new sd card so they could send my doc the data. postage paid envelope too i stuck a note in it asking for a copy of my detailed report. suprise again i got it in an email. but what i did not see was my 2 days of waveform data showing my "open airway apneas"
now just to let you know i got them saved. so at some point in the near future i got some ammunition to go off on the doc (if i can even see him. usually just the PA)i'll give it a few more days then i'm calling. it will be interesting to hear what they say.

robysue : i feel your pain. after 5-1/2 years i'm no better than when i started. Fibro symptoms rls plmd insomnia and bouts of waking 5 or 6 times a night have taken thier toll on me . amd most of this started AFTER i started cpap. go figure. cant find a good pcp they all just think i need to see someone else. sick and tired of being sick and tired.

so if no doctors are needed in heaven do they all go to hell????

[Slinky]

... And Slinky, you mentioned TRENDINESS (is it Jeff's word?) ...

Goshes, Avi, I don't know if TRENDINESS is Jeff's word or not. it certainly isn't mine. I didn't say TRENDINESS. I said

... I do think that these fully data capable xPAPs DO provide valuable information via the TRENDs they can document that a "one night stand" at the sleep lab CAN'T. Personally, I think the data from both the PSGs and the xPAPs are complimentary and of value. ...

And, Avi, m'love, I failed to thank you for the lovely picture of slinky ole me!!! I LOVED it.

You also said:

... Do you expect them to sit down and go over your endless XPAP data? Forget it! ...

GOOD POINT! And, no, I don't expect sleep doctors to go thru page after page of 6 months or so of data. And if I'm doing good, feeling good and my compliance is good, that summary or statistics page is good enough. BUT - WHEN I am having problems THEN it is time for the sleep doctor to have a good RRT or someone on staff who UNDERSTANDS sleep and the various PAP data to sit down and scroll thru some of those pages to try to detect the problem or a problem. I do NOT see that as the responsibility of the local DME provider's RRT (whose main job and responsiblity is their RESPIRATORY patients) to go thru the efficacy data to try to detect any problems we may be having. We NEED someone who KNOWS sleep and xPAP data to help us. Or get the hail outta the way, quit depriving us or trying to deprive us of the means to dig out the necessary information ourselves. If they aren't willing and/or able to devote the time and information needed to find a solution then they are part of the problem.