Whats the worst that could happen? [Doctor/DME reactions]

[blakepro]

So, I'm just curious...

I often read about people here that are nervous about talking to their doctor or DME because they have tweaked their settings and they are afraid of how the doc/dme are going to react.

I'm just curious: Whats the worst reaction you have had? What can they really do? Refuse to be your doctor any more? scold you? Has anyone had anything happen that was truly horrible?

I'm not really interested in a discussion about the health risks that may or may not be involved when changing your own settings but rather a discussion about the reactions of your medical professionals when they find out you have been doing it.

Anyone have any interesting thoughts / stories?

[montana]

I pulled the label off my mattress...

[DreamStalker]

Does rendition, gitmo, and cpap boarding ring a bell?

[Julie]

Right now I think most of us use the "Don't ask, don't tell" approach unless we know we're dealing with intelligent, knowledgable, flexible MD's (forget DME's = they just don't count here) who appreciate having patients understand their own therapy, just like they do for diabetics who monitor their treatment and make necessary adjustments without running to someone every time they're needed.

[Tielman]

Does rendition, gitmo, and cpap boarding ring a bell?

To you, or the Doctor

[asylvia]

My DME wasn't happy and basically said what i was doing was illegal. he did however call my doctor and tell her to change my prescription to what i changed my settings to with the understanding that if i want to change them in the future to talk with him first and have him get the legal documentation (prescription) in order first.

[ww]

My sleep doctor looked carefully at my Encore Pro printouts. I told him I had to increase the pressure to get better AHI. He simply said that the sleep study is only a small slice of time, and the auto CPAP over a longer length of time would be more accurate. The DME called after 26 months and wanted to come by and read my card. I told them to mail it to me!

[elena88]

My doctor wants what is best for me, and whatever will make me happy and improve my therapy.

She is my first sleep doctor, and will be my last.. Wild horses couldnt drag me away!

[blakepro]

Wild horses couldnt drag me away!

*the wild horses turn around and leave in dissapointment*


Great responses so far everyone! I find it all quite facinating for some reason.

[blakepro]

Well here is an account on the positive side that was recently posted by brucelegs here: viewtopic.php?f=1&t=52336

Had my first annual visit with the sleep doc. My original pressure was set to 4 - 10. After learning so much here I tweaked it to 8 - 11. My DME had read the card about 6 months ago and said nothing about the adjustment so I fugured the doc would not catch it either - I was wrong. " Did I send in a prescription change? I had you at 4 -10" Dasm ! I kind of hemmed and hawed, mumbling stuff about ramping, times , etc. and finally told him I made the adjustments myself after seeing some of the nightly results. "You know how to do that?" yep got the software too.

He was impressed that I have only missed one night when I spent a night away and brought the machine but not the mask. These doctors should pay ME for being such an intelligent patient!

Thanks to everyone here I am EMPOWERED !!!!!

I'm starting to definitely feel like the best policy is to just be up front about your setting tweaking and not to fear their reaction. Does anyone else have any stories?

[kteague]

Maybe some more folks will see this and post as time goes on. There's been quite a bit of discussion on the topic thru the years, and I too am interested in seeing some consolidated reports on experiences. My prior sleep doc got downright angry with me for asking for an autopap. Ended up storming out of the room and sent his assistant back to finish up. Can't imagine how he would have acted if I'd changed my pressure. There is a dynamic that has been a part of doctor/patient relationships probably throughout time. It is a dependency on and respect held for the education and knowledge of the physician, especially since so little of what the physician has learned was available to the general population. That availability of information is changing, and different treatments are evolving. What hasn't changed is that doctors still have the benefit of an overview that can see the intricacies and interactions of the many systems and symptoms. Another thing that hasn't changed is the variablilty in personal abilities of both physicians and patients. Some patients should not be turned loose with even the most basic of decisions in their medical care. Neither should some doctors. But, as it stands now, sleep apnea treatment is prescription based, and until that changes legally, doctors are understandably reluctant to put themselves in a position of sanctioning patient driven treatment. Maybe some of the reactions come from a resentment that a patient would put them in this position. I have always presumed arrogance, but that other perspective just came to mind. Hasn't changed my opinion that my former doctor was just plain arrogant and indignant that I dare suggest an answer where he had been unable to help. As for what's the worse that could happen, I guess a doctor could fire you as non-compliant, or it may compromise insurance coverage if treatment is not as ordered by the physician. For some, confrontation is a worse fate that than those. But I agree. Ideally a patient could be honest with their doc upfront. And maybe the doc could sanction patient changes within paramenters that keep it doctor prescribed and everybody happy. But I wouldn't hold my breath.

[Wulfman]

It's always best to be able to backup your rationale for changing your settings......especially with software reports.

Five years ago, a few weeks after I started therapy, I went in for my follow-up visit......with a stack of Encore Pro and MyEncore reports. I had changed my prescribed pressure of 18 cm. to 10 cm. after about one hour of use. I couldn't see starting out at such a high pressure, which was very uncomfortable.......if a lower pressure would help me become accustomed to this therapy. After all, I had the software from the beginning and if tweaking was necessary, I could easily do that. It turned out that the setting of 10 cm. gave me AHI numbers of less than 1.5 in the first several nights of use, so, I was optimistic.
Anyway, the conversation with the sleep doc went something like this:

Doc: (looking at his paperwork) Let's see.......you're using a pressure of 18 cm........

Me: Well, I DID try it for about an hour and then reset my machine to 10 cm.......and am getting AHI numbers of about 1.5 or less. Here's the reports from the card downloads from the machine. (I show him the reports)

Doc: That can't be right. Those can't be accurate. How can you be doing so well on almost half of the pressure you were prescribed?

Me: The data from the machine shows all the events on these reports. SEE, here they are. (pointing out some hypopneas and other events) An AHI of less than 5.0 is considered "normal", isn't it?

Doc: Well, yes.

Me: Then my report numbers could be off by 300% and I'd still be below a 5.0 AHI.

Doc: How did you change your pressure?

Me: I just went into the setup and changed it.

Doc: < Silence > (with kind of a funny look on his face)

After a pause.......

Doc: I'll order an overnight pulse oximetry.

This was my last visit with him. I had my pulse oximetry a few weeks later......got a copy of the download report that was being sent to the doctor.
I was supposed to have another appointment after the pulse oximetry, but I canceled out. I had had my fill of this arrogant jerk and told the receptionist when I called to cancel that I wasn't about to pay money to be talked to and treated that way. She asked me if I wanted to file a complaint with the office manager. I told her that I didn't think it would do any good. This doctor"s "reputation" had preceded him.......I had talked to others who had been to him previously.

It's YOUR therapy. But, if you start "dial-winging", you should be able to backup WHY you're doing it.


Den

[wil]

Has it occurred to anyone else that we're the troublemakers for these guys?

Most people just get their equipment, go home, and use it, or don't use it. We're a select few that go this deep into our treatment. We are the ones that want to take control... Those who don't wouldn't show up here!

[akcpapguy]

If you are a Medicare or Medicaid (atleast in Alaska) your service could be terminated by the DME due to non-compliance. We (the DME I work for) do not do that, we just work with the physician to get a corrected script. Some providers do however discontinue service to people .

[rubymom]

Just had an appointment this Monday. The doc didn't even notice. But that's probably because my treatment is going well. He focused on the same things I do after he confirmed compliance. He was looking at the AHI, leaks, blew off vibratory snore, and so didn't focus on my pressures except to say my pressure went down because I lost 20 pounds (yeah right).