How useful is Data?

andy88488 · Post by **andy88488** » Mon Dec 10, 2007 1:00 pm

Hi all,

As you can see from the Sig, I have a Resmed Compact. I am basically 100% compliant, although I do take occasional naps (usually 30 min - 1 hr) without CPAP.

I've been using CPAP since early July, but am not feeling a real difference in alertness nor do I feel well-rested. In fact, sometimes I feel more poorly rested than I did before CPAP.

I think that at least part of this is that it took a while to find out that I had mouth leaks, and since then I have been trying to find the right Full Face mask for me.

But I was wondering if a better CPAP machine with the ability to capture data would be helpful to me. When I asked the Doctor, he said that the main purpose of the Data ability was to verify compliance, and that since I was 100% compliant, this would not be helpful to me.

I'd appreciate any feedback or suggestions.

Thanks,

Andy

Wulfman · Post by **Wulfman** » Mon Dec 10, 2007 1:07 pm

Andy,

Your Doc's another idiot. (unfortunately, they're very plentiful in this field of medicine)
Please read Jerry's thread about his success:

viewtopic/t26629/Another-Anniversary-Th ... -Long.html

Personally, I can't imagine doing this therapy without being able to monitor it.

Den

Snoredog · Post by **Snoredog** » Mon Dec 10, 2007 1:10 pm

I assume here you mean machines that display or report sleep data?

I find them very effective, it is like your gas gage in your car, it is either E for Empty or E for Enough.

The data presented by these machines doesn't really have to be all that accurate, but the data can still be used as a "gage" on how your sleep is progressing. If you take steps to improve your sleep the number of events seen/reported will go down, if you go the wrong direction they will go up.

Most people's goal here is to get the numbers as low as possible.

DreamStalker · Post by **DreamStalker** » Mon Dec 10, 2007 1:19 pm

Not only do you need a better machine ... you need a better doctor.

sleepycarol · Post by **sleepycarol** » Mon Dec 10, 2007 1:20 pm

Could it be that your doctor doesn't know what kind of data is supplied?

My PCP doctor didn't have a clue what data could be found on the data card. When I spoke with her about the data she was amazed at some of the things I told her it would show. I promised to print off a few nights of my data to take in next time I go in and can remember to have it printed. Apparently from what she said she thought it was mainly compliance as well. My sleep doc (which I never saw) is the one that prescribed an apap for me. I have wondered if he prescribes all of his patients apap's or just certain ones. I have thought about asking my daughter-in-law as the doctor she works for is next door to the sleep doctor's office (both are in the same hospital) and they sometimes visit.

I feel fortunate that I didn't have to fight the doctor on my equipment as he pretty much gave me me the best equipment without my knowledge at the time. Now the DME was a different story as they tried to pawn a M series Plus machine on me as being the prescribed one -- I was just fortunate that I found this forum and was straightened out pretty fast.

I download my data every couple of days. I have found a few masks that work well and then some that don't work so well going by the data. It lets me see where or what I need to work on to make my treatment better.

Others do not feel a need for this (I am a natural born "fixer" and anal retentive about certain things) and have no desire to mess with it. They are content to let the doctors take care of their therapy. I do know that an APAP and data will allow you to forego another sleep study if things change. For that I am grateful as I am trying to lose some weight and may need a pressure change after a while.

ozij · Post by **ozij** » Mon Dec 10, 2007 3:17 pm

The simpler machines have only compliance data. The better ones have data that can help your treatment: AHI, snores. leaks, usage patterns, flow limitations, etc.

Your doctor is clearly ignorant of some of the information you can get from the more sophisticated machines.

O.

andy88488 · Post by **andy88488** » Mon Dec 10, 2007 3:26 pm

ozij wrote:The simpler machines have only compliance data. The better ones have data that can help your treatment: AHI, snores. leaks, usage patterns, flow limitations, etc.

Yes, I guess the question I was trying to put was "Would this data be useful to me?" I keep thinking that really the only variables are mask fit/comfort and cpap pressure, so what good are all these statistics? Do they really give you insight?

ozij · Post by **ozij** » Mon Dec 10, 2007 3:38 pm

We use the data to evaluate the mask fit and the pressure. And when the data shows they are wrong we change them . If you have no intention of using the data to indicate necessary changes which you can discuss with your doctor, then of course you don't need it.

Data is a great help is tracking systematic changes made in the variables that affect therapy results.

As Den said - Jerry (6ptStar) has just posted a classic, typical example of why the data is important. Jerry was stuck for 6 months at an AHI of 22, with a doc who wouldn't even read his data. Then he found a way of reading his own data, made changes in his mask and pressure, and has been at an AHI of 0.3 for three months.

He's far from being the only one to have had this experience.

O,

rested gal · Post by **rested gal** » Mon Dec 10, 2007 6:26 pm

I've put it this way before...I'd feel like I was driving on a mountain road in the dark and in fog, if I couldn't see full data when I want to.

Besides, I'm just kinda' nosy about every aspect of this treatment stuff.

It's said that we spend a third of our life sleeping. I want to see what the machine is finding while I'm asleep. And what it's doing about it. I've done a lot of tweaking on my own.

Captain_Midnight · Post by **Captain_Midnight** » Mon Dec 10, 2007 8:40 pm

But I was wondering if a better CPAP machine with the ability to capture data would be helpful to me.

Andy, I can tell you that I find the data to be quite useful. I had a straight CPAP for 2 yrs, and never knew whether my therapeutic pressure was optimized or not.

Now, (thanks to an understanding pulmonologist, who recommended that I change to AFLEX APAP w data recording) I can see just what pressures and ranges from the machine, as well as other variables, affect my AHI. (I had to pay $900 since my insurance wasn't going to buy a new machine for me with only 2 yrs on the current one. For me, the expense was worth it. For others, it might be a luxury with too little of a payback.)

Good data lead to informed physician and patient therapeutic choices.

Regards all - - Tom

.

jskinner · Post by **jskinner** » Mon Dec 10, 2007 9:48 pm

andy88488 wrote: Yes, I guess the question I was trying to put was "Would this data be useful to me?" I keep thinking that really the only variables are mask fit/comfort and cpap pressure, so what good are all these statistics? Do they really give you insight?

These graphs might give you an idea of some of the other information that you might find useful with a data capable machine http://james.istop.com/EncoreProAnalyzer/charts/

andy88488 · Post by **andy88488** » Tue Dec 11, 2007 10:11 am

jskinner wrote:
andy88488 wrote: Yes, I guess the question I was trying to put was "Would this data be useful to me?" I keep thinking that really the only variables are mask fit/comfort and cpap pressure, so what good are all these statistics? Do they really give you insight?
These graphs might give you an idea of some of the other information that you might find useful with a data capable machine http://james.istop.com/EncoreProAnalyzer/charts/

Wow, that's a lot of stuff. I definitely see the point with an APAP.

Thank you all for your replies. I'm going to talk to my doctor and see if I can get him to upgrade me. Sigh! What a pain. I wish they had given me a better machine in the first place.

Andy

DreamStalker · Post by **DreamStalker** » Tue Dec 11, 2007 10:21 am

If your doc is affiliated with the same place you had your sleep lab study and also the same place where you got your equipment ... you will most likely encounter resistance. They will make you feel like you don't know what is best for you and that only they can take care of you.

Should you encounter said resistance, you should kindly thank them for their concern and ask them for the prescription. Then you contact your insurance about your options for filling the Rx ... including reimbursement options.

Best o luck!

rested gal · Post by **rested gal** » Tue Dec 11, 2007 4:18 pm

andy88488 wrote:I wish they had given me a better machine in the first place.

Andy

That would be a rare occurence -- that a newly diagnosed person were given more than a machine that records only "hours of use." Machines capable of recording AHI data are more expensive. Less profit to the provider if they give out more than a bare bones machine.

And let's face it. Most cpap users don't care one whit about finding out more about their therapy. Not meaning you, Andy...I'm talking about the majority of people diagnosed with OSA. They figure that whatever machine and mask is handed to them is what the doctor thinks is best for them. They have no idea that other than type of machine (cpap vs bilevel on the Rx) it's almost always the DME, not the doctor, who chooses what to pull down off the shelf to give them.

Unless the person educates himself/herself about this kind of treatment beforehand, and is willing to dig in their heels to hold out for exactly the machine they want -- even if it means going back to the doctor to get the Rx re-written -- a basic machine is what they'll get.

Everything about this kind of diagnosis and treatment is so new to most people, it's understandable that most just pick up their equipment when and where they're told to do so. After all "cpap" is "cpap", isn't it? And "the doctor knows best."

Good thing you found your way to this message board, Andy. Late is always better than never when it comes to working out the pieces of the treatment puzzle. Welcome to the board!

RipVW · Post by **RipVW** » Tue Dec 11, 2007 6:07 pm

Wulfman wrote:Andy,
Personally, I can't imagine doing this therapy without being able to monitor it.

Den

Ditto!!!

How useful is Data?

How useful is Data?

data-capable machine helpful?