Doc told me most people aren't interested in data

PartlyCloudy · Post by **PartlyCloudy** » Wed May 07, 2014 10:45 pm

When I saw my doc (sleep study specialist- neurologist) for my followup he was pleasantly shocked that I brought my card in and that I'd been tracking my data on Sleepyhead. He told me most people don't do this. The way he said it and based on his reaction to my interest made me think I was his only patient who did.

I'm surprised!

Just thought I'd share....

Drowsy Dancer · Post by **Drowsy Dancer** » Wed May 07, 2014 10:56 pm

Snort.

My doctor said I was "most advanced patient" he'd ever had. He couldn't believe it when I said I was a piker compared to some of the people on my message board.

He thought SleepyHead was cool.

PartlyCloudy · Post by **PartlyCloudy** » Wed May 07, 2014 11:02 pm

Right, lol, I'm the same. I know NOTHING compared to people here. My doc would be stunned.

Wulfman... · Post by **Wulfman...** » Wed May 07, 2014 11:03 pm

PartlyCloudy wrote:When I saw my doc (sleep study specialist- neurologist) for my followup he was pleasantly shocked that I brought my card in and that I'd been tracking my data on Sleepyhead. He told me most people don't do this. The way he said it and based on his reaction to my interest made me think I was his only patient who did.

I'm surprised!

Just thought I'd share....

As you probably know by now, the "typical" user (for years) has been given a cheap, non-data-capable ("brick") machine. So, how can they be interested in "data" when their machines don't have it? Kind of a "catch 22" situation.
Had it not been for these user forums, online equipment sellers and spreading the word, they would still be doing that.

The other sad part of the equation is that a very large portion of users really DON'T care about monitoring their therapy. They're probably pissed-off that they have to sleep with it in the first place and if they continue to do so, just assume they're following the "doctor's orders".......blindly and unquestioningly.

Nine years ago, my doctor questioned the accuracy of the data when I showed him my reports from my data-capable machine.......especially when I had reset my machine for a much lower pressure......and had excellent results.

Den

.

Stevoreno_55 · Post by **Stevoreno_55** » Wed May 07, 2014 11:12 pm

Drowsy Dancer wrote:Snort.

My doctor said I was "most advanced patient" he'd ever had. He couldn't believe it when I said I was a piker compared to some of the people on my message board.

He thought SleepyHead was cool.

A piker? I'll have to go to Mr. Google for that one.

Stevoreno_55
MS Gulf Coast
05/08/14

kteague · Post by **kteague** » Thu May 08, 2014 12:48 am

Stevereno I had to consult Google too. Found that in general it is one who does something in a small way. My docs have been surprised by this piker too. Some have been happy about it. Others - not so much. In the circle of those I know who use CPAP, I am the odd one out. Thinking of 4 friends right now and none of them watch their data. They trust that their providers will tell them anything they need to know. Two are seeing the same doc I had so they're in good hands. The others I'm not so sure. Based on their symptoms, I'd say they are not.

Denial Dave · Post by **Denial Dave** » Thu May 08, 2014 4:04 am

I've got 3 friends that are also on CPAP therapy. All of us have fully data capable machine.

One checks the data every single day.

The 2 other friends have never checked their data and have no desire to do it.

They are perfectly happy leaving the analysis to their doctor.

Madalot · Post by **Madalot** » Thu May 08, 2014 5:04 am

Denial Dave wrote:I've got 3 friends that are also on CPAP therapy. All of us have fully data capable machine.

One checks the data every single day.

The 2 other friends have never checked their data and have no desire to do it.

They are perfectly happy leaving the analysis to their doctor.

I have a family member that failed cpap, bipap and ended up on an ASV. I tried everything I could think of to get him to learn more about his therapy and watch his own data. He smiled at me but it was a patronizing smile, almost like he was patting a child on the head. If the doctor doesn't tell him, he doesn't know about any of it -- and doesn't want to know or care.

I don't bother to ask how it's going anymore because you can tell that just my asking irritates him.

LSAT · Post by **LSAT** » Thu May 08, 2014 5:07 am

Denial Dave wrote:I've got 3 friends that are also on CPAP therapy. All of us have fully data capable machine.

One checks the data every single day.

The 2 other friends have never checked their data and have no desire to do it.

They are perfectly happy leaving the analysis to their doctor.

I have an even better example. I have a friend that has been on CPAP for over 10 years,.At that time he went to a doctor/sleep centr that put him on CPAP with pressure of 10. He has not seen a cpap doctor since then. He has gotten new CPAPs twice since then using his original sleep study info and has never once looked at his data even though he has a data capable machine. He is still using the 10 setting and is happy with it. I showed him how easy it is to check data but he's not interested.

chunkyfrog · Post by **chunkyfrog** » Thu May 08, 2014 6:05 am

Denial Dave wrote:I've got 3 friends that are also on CPAP therapy. All of us have fully data capable machine.

One checks the data every single day.

The 2 other friends have never checked their data and have no desire to do it.

They are perfectly happy leaving the analysis to their doctor.

It's exactly like diabetes, except almost everyone, especially the medical community, needs to catch up!

Drowsy Dancer · Post by **Drowsy Dancer** » Thu May 08, 2014 7:08 am

On a related note, my DME was flabbergasted by my request for the firmware upgrade that I know for certain is available for my original machine. Never had they ever had someone make such a peculiar request. I dunno, to me it seemed like part of the (non-existent) service they still charge me for twice a year.

old dude · Post by **old dude** » Thu May 08, 2014 7:46 am

Drowsy Dancer wrote:Snort.

My doctor said I was "most advanced patient" he'd ever had. He couldn't believe it when I said I was a piker compared to some of the people on my message board.

He thought SleepyHead was cool.

DD, my new doctor (more later on the "new" part) told me exactly the same thing. He went so far as to say he thought I knew as much about this as most doctors! This really made me laugh because I thought wow, what would he think about the folks here who really know their stuff? Clearly I'm on the bottom rung of knowledge here. Then Tuesday, the RT at my DME told me I was the most educated patient he had encountered. I thought the same thing all over again.

I think the truth is that most patients just don't get into it like we do here, but rather just blindly accept whatever they are told by their docs and RTs. I had lunch with an old friend Tuesday who has been on therapy 5 weeks, and could not only not tell me his pressure settings, but didn't even know what brand machine he had.

I think it's a pretty normal state of mind on forums like this to think the participants are the norm, when in fact they are not.

chunkyfrog · Post by **chunkyfrog** » Thu May 08, 2014 8:26 am

BUT WE NEED TO CHANGE THIS!

Janknitz · Post by **Janknitz** » Thu May 08, 2014 8:55 am

I think the medical community fosters this ignorance. When we first get a machine, many people ARE curious, but they either have a brick or they are told there is no user accessible data available.

This way, DMEs can charge money for data download (even if only compliance data) and sleep specialists can charge for office visits. Untrained physicians don't have to feel bad about what they don't know if you are sent back to a PCP for followup care.

And most medical providers think we are too stupid to understand, anyway.

echo · Post by **echo** » Thu May 08, 2014 9:43 am

I get told by friends & doctors that I'm too "obsessed" with charting and tracking my data (and not just for cpap). Ugh. As if the stick-your-head-in-the-sand approach yields such excellent results.

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Mask

Additional Comments: Newly diagnosed pressures as of June 05, 2014 are 22cmIPAP and 18cmEPAP; first diagnosed with OSA in 1999.