I'm a little annoyed

[Outlier]

About what I see as the unnecessary involvement of the DME in my treatment experience. They are necessary in order to provide and maintain our equipment and supplies and provide the insurer with compliance data, but this whole bit bit about needing them to make pressure adjustments is frankly insulting.

I saw my sleep doc last week for a one month follow-up, and he prescribed a pressure change. I was very candid with him and told him that sending the DME an order and waiting for them to change the pressure was really unnecessary because I could do it myself in just a few seconds. He didn't comment one way or the other on this, and sent the order to the DME, who was to make the changes via modem. "Okay," I thought, "I'll play the game," so I waited for the DME to change my pressure, but at the end of the day when it still wasn't changed, I just did it myself. So simple. Who needs the middle-man, right?

So on Wednesday of this week (6 days after my doctor faxed the pressure change order), the DME called and said my modem wasn't calling out. No surprise; I told her when I picked up my APAP that this might be a problem due to coverage where I live, compounded by a metal roof on my house. She then informed me that she had an order to change my pressure and that if she couldn't modem in to my machine, I would need to bring it to them for the change. The DME is located in a very congested area on the other side of time that I really try to avoid, and I would have to take off from work in order to accommodate their business hours. I told her "no worries, I took care of it," and she was aghast. "Oh, no," was her reply. She said "well go home and unplug your unit and plug it back in, and hopefully I can modem in, and IF you have actually done this correctly, I'll just need to send you a new card and you will mail yours back to me so I can read the data." This DME had told me before I got my machine that I didn't need to access sleep data because it would just confuse me, and offered no instructions on how to even obtain info like avg. pressure, leak and AHI from the on-screen menu.

I find this whole game ridiculous, and I have zero patience for crap like this. Do they really expect us as patients with a potentially life-threatening condition to sit back and remain clueless and wholly dependent upon doctors, DMEs and insurers? Do they not know that anyone with an Internet connection can learn vastly more than they are telling us? Even if forums like this didn't provide information on how to access the clinician's menu, for example, I would have figured it out. Anyone that ever owned a digital watch or clock knows that in order to access a setup menu, there is almost always two buttons you hold down for a few seconds that brings up the menu. Are we really supposed to be THAT stupid?

Furthermore, I asked her about emailing the card data instead of using postal mail. She said there's no way to do that. Uh, yes there is, and it's called a disk image. While it may be too large to attach to an email, there are plenty of tools out there like DropBox that can easily transfer large files. I didn't bother to argue with her on this point because, after all, they are in sole possession of this crucial knowledge, and I'm just a dumb, clueless patient.

A bit of good news to mitigate this nasty little rant: the pressure change was "just what the doctor ordered." I had an AHI of .7 my first night, and haven't gone over 2 since. HUGE improvement on my AHI of 77.6 during my sleep study. Treatment can be life-changing, but in order to optimize its efficacy you have to take some matters into your own hands.

[chunkyfrog]

You might also send a note to your insurance to the effect that since you changed your own pressure,
they do not need to pay the DME for doing it.
(cc the DME and your doctor. They should love that.)

[sleeplessinaz]

Wow! What a bunch of nonsense! I change my own pressure and I never ask my DME to do anything for me - that's totally rediculous for them to say to send in your card to them in the mail from the machine. You will never see it again. I would switch doctors too - what kind of doctor won't acknowledge that you are smart enough to take care of yourself?

Carrie

[BlackSpinner]

You are lucky they didn't try to tell you it is illegal, some of them have tried that on people.

[SleepyToo2]

You are lucky they didn't try to tell you it is illegal, some of them have tried that on people.

Me, for one. I have now made several changes to my pressure. Turned off c-flex, too. Have not gone outside the "prescribed" range - started off at 8 (titrated) and up to 10 (doc recommended because of snoring). AHI continues to fluctuate, but generally below 2.

Stress seems to play a big part in my AHI. I know I need to meditate, exercise, etc to get that under control...

[hueyville]

My doctor appreciated a years worth of data from my dial winging. 1st two doctors refused to see me after sleep study so spent almost a year pushing buttons and twisting knobs. Finally new doc came to town with state of art lab. Did not run me ocf after 1st lab sfudy or ocfice visit. My doc will say try x for a week, change to y for a week then z for a week and drop off a printed report. His paid staff member for programming changes no bothered and when showed her sleepyhead she downloaded a copy to use. My machine never leaves my home and my data card belongs to me. My insurance company has never asked for one minutes compliance data. I have no DME. I order what I need from whoever is most convienent and they bill insurance.

[idamtnboy]

She then informed me that she had an order to change my pressure and that if she couldn't modem in to my machine, I would need to bring it to them for the change.

Not the least bit swift, is she? Sounds like she didn't know she could put the needed changes on the card and then when the card is inserted into the S9 the machine settings change per the programmed settings on the card.

[JohnBFisher]

Outlier, when you have a conversation with a doctor or other medical professional who says that you should not look at the data you should use an analogy that they can understand.

You are absolutely right that we should monitor our own therapy. And if done carefully with data, we should also work in concert with our doctors to manage our therapy.

Here's the analogy. Tell them that you have a friend who has a serious disease that damages his cardiovascular system and organs. Tell them that as a result he had to administer blood tests for our more times per day. On top of that he had to monitor his physical exercise. He also must closely monitor what he eats. Worse yet, based on all of that data he must properly self administer a medicine, which if he gets the dosage wrong can be deadly.

Your friend of course ids an insulin dependant diabetic patient.

If doctors can allow diabetics to manage their own situation, surely a little CPAP or BiPAP can be handled by the average patient.

[Catnapper]

After all, it is only AIR !!!!!

Catnapper - Joanie

[Sir NoddinOff]

As I see it: For some sleep doctors,staff and their DMEs, it's all about making extra bucks and exerting control over their patients... they use a standard template and don't like to stray from it because it makes life simpler FOR THEM. In contrast, for some other enlightened sleep doctors, staff, etc, it's all about teaming up with the patient to help solve their sleep problems in creative ways, even if it includes the patient sharing their own data.

It's just the way the world works. It's no different that that local helpful bank down the street versus an impersonal mega-bank. It's no different than a hair stylist or barber in an impersonal nationwide chain versus your neighbor who has his barber pole up at a corner shop downtown. It's about the local organic farmer who cares about his produce versus some agribusiness firm who will dump whatever chemicals on the crops required to make money. Some people are creative and solve problems while others just want money while delivering the minimum effort to get it, irregardless of the consequences.

[Gparr]

My DME...um RT about hit the roof when I brought my card in and she saw I have bumped my low pressure side from 5 to 6. She said that it is against the law and only a prescription from the doc would be acceptable to make a change. My comment to her was to look at the numbers...my AHI went from the upper 4's to the upper 2's. She asked if I knew what I was doing and I commented that I probably know more about my machine than she did...she looked at me and kind of giggled and said..."well go home and bump your pressure from 6 to 8 and call me in a week!" That was 2 months ago and all now is good! It seems now that I DO NOT need a prescription...since she said she would report in with the change.

[rkuntz123]

WOW peoples experience varies all over the place. The techs at my lab monitored my machine by modem once at my request about two weeks after I started and said I was doing fine and I've never heard back from them. And I know they haven't monitored or even downloaded my data since then because after removed the Modem for travel and never reinstalled it they've not called asking about the lack of communication/data.

The Techs were good and happily they basically got it right the first time but I wonder:
- Why my Lab's Doc who I never met has never communicated with me, I assume that my referring Doc has copied with the the labs results and a copy of the Script but assumptions are worth the paper they're written on so I'll have to ask him during my next visit.
- What's the prognosis for Apnea and why no follow up?
- Is my insurance being billed for followup that I'm not experiencing?