Does your doctor/DME know you're reading data?

[xm41907]

I'm curious how many people inform their Doctor and/or DME that they are reading the data using Sleepyhead software or other. I'm new to this and am having high AHI from centrals. I'd been on my cpap for only 3 days when I called my DME and said I was having high AHIs. He got really defense sounding and asked how I knew. I only said that I read the information from the machines LCD display, not mentioning Sleepyhead.

Should I inform them that I'm tracking things myself, or just play ignorant?

[MaxDarkside]

My doctor knows, and in his case, he likes it and gave me free reign for a year. I think some doctors would have a serious issue with it. My DME doesn't know I know my stats in detail, but knows I change settings in the machine and they get very upset that I've done that because they didn't have a prescription on hand that instructed them to tell me to change the settings to the values I'm using. In the time this occurred, they got in a huff and transferred me to my Dr's nurse so I could get a tongue lashing, but she listened to me, then wrote a prescription for the settings I'm using, then got the Dr. to sign and sent it to the DME to set the DME straight.

I would think that the opinions of the Dr. and DME would / could vary greatly and one might be careful about the situation.

[LSAT]

Doctors don't care if you check your blood pressure...they expect diabetics to check their blood, why shouldn't apnea sufferers check their data? See what your doctor responds to that.....

[Grand-PAP]

Ditto to LSAT.

For my last appointment, I made copies of my charts, including reformatting some of them in Excel, in order to display the data differently. The doc didn't seem concerned at all. I think if he were, I would probably be looking for another doc. Docs should encourage us to monitor our conditions. The more informed and aware we are, the more effectively we can participate in our theraphy.

[Ticman]

My PCP knows I track my data. She also knows I change my pressures. When my sleep doc moved 2000 miles away she got a copy of my records. We discuss my sleep every time I see her.

As fas as a DME is concerned they provide medical equipment. They do not dictate care IMO.

[JohnBFisher]

Ditto to LSAT !!

In my case my doctor is both pleased and encourages me to bring the data to review. When I've made changes (upping my initial inhalation pressure, as an example), he was happy to hear how I confirmed that the slight change made a difference. "I feel better" is NOT a good answer. The data shows fewer hypopneas is a good answer.

[Kairosgrammy]

Well, actually, I haven't seen my doc since I did start. If he did resent it, I'd be like oh well. I figure I'm a much better patient now that I'm getting more informed. I can look at my data and if I see an alarming trend, I know exactly what to tell him. So far, not needed.

I'm curious how many people inform their Doctor and/or DME that they are reading the data using Sleepyhead software or other. I'm new to this and am having high AHI from centrals. I'd been on my cpap for only 3 days when I called my DME and said I was having high AHIs. He got really defense sounding and asked how I knew. I only said that I read the information from the machines LCD display, not mentioning Sleepyhead.

Should I inform them that I'm tracking things myself, or just play ignorant?

[Paul56]

Nothing wrong with taking an active role with respect to your own care and well-being... so ask
the naysayers if there is anything wrong with that and see what they say.

If they claim you will not be able to interpret the data... ask them to provide you with instruction
with respect to that. Chances are they will refuse. Then you can turn the tables and suggest they
are not assisting you with your own care.

I don't see them...

- refusing to show diabetics how to inject themselves with insulin
- refusing to show diabetics how to use a glucose meter and interpret
the results
- refusing to show high BP patients how to interpret their own BP readings
taking on how machines
- etc, etc, etc...

The DME needs to be cut out of the solution. The sleep doc can write an equipment prescription
that could be either ordered online or picked up at a pharmacy. The DME is simple another entity
taking a slice of the pie and in most cases providing little value in return.

[chunkyfrog]

I write my data from the machine each morning in a notebook right alongside my blood glucose and my insulin dosage.
The book goes to every appointment.
My respiratory doc has asked for print-outs, so he gets them for both of us.
He seems quite pleased to have this data.

[wolftracker]

My sleep doctor has no problem with me having data and making changes as needed
he wishes more of his patients knew how to manage their sleep care.

my .02
wolf

[xm41907]

All great comments. Thanks. Just to be clear, it was the DME that sounded huffy and not my doctor. I received my unit on a Friday and this was the following Monday when the DME called to see how the weekend went. I most definitely plan to let my doctor know if I feel things aren't working. My reason for hesitation with the DME is that I'm technically renting the unit from them for the next 11 months. My insurance will not buy the unit outright, and they require periodic compliance checks. I didn't want to piss off the DME first off when it's still their machine. Let's say based upon the data I feel I need to change the pressure. Without actually getting a new prescription, if they saw the change, could they say I am going against my prescription and then the insurance wouldn't cover it? I'm probably just paranoid, but I've heard too many insurance claim issues for all kinds of medical things.

[Paul56]

Don't worry about upsetting the DME... as long as insurance is
paying they will be quite happy to provide you with a machine.

[xenablue]

My neuro (and all my other doctors) are fully aware that I not only read my detailed data, but also that I mess with my pressure settings (but only within a small range as that's all I need to do).

They already know that I'm a "take control of my own health" kinda girl, and are 100% behind my decisions in this. Hence, we make decisions on my health care together - all of us being informed.

Cheers,
xena

[Emilia]

My sleep doc supports my pro-activity with my treatment 110%!

[cflame1]

The GP hasn't expressed an interest... and I currently don't have a sleep doc(haven't looked for one since I moved).