Do any doctors care about the data on my auto cpap

[Mark Douglas]

Back in 2008 when I started this, I used Encore software and a smartcard reader to get the data off my Respironics Remstar Auto M-Series. That software was a pain in the butt, however I took printouts to my doctor and discussed the therapy. Those charts became part of my permanent record and documented the effectiveness of the therapy.

I have not seen the same interest among sleep specialists, but my primary physicians have consistently been interested in discussing the therapy, charts and my sense of treatment effectiveness. As a result I have never needed additional sleep studies, and my GP writes all the scripts I need based on my instructions for machine type, model, pressure settings, etc.

Once you have a diagnosis, I think most people are better served simply working with their primary physician, rather than a specialist that is vested in return visits, additional studies and inferior equipment that does not provide data that they don't want you to see.

Well said. I am of the opinion this si one of the first things everyone who staggers in here ought to see.

[cpdaniel]

My significant and uneasy concern is for the probably many thousands of people being inadequately treated for sleep apnoea worldwide who are not computer literate, or who don't have access to a computer, or are too scared to challenge doctors, or have no-one to speak for them, or who are not insured for a machine in the first place. I just wish we could somehow reach out to those people too. Maybe, maybe? an <Apnoea Board Charitable Foundation> - anyone know Bill Gates's email address...

I couldn't agree more, except for one thing: I think it's not thousands, but millions that are being treated inadequately (or not at all). Sleep medicine is still a relatively new specialty - only 35 years or so - and it's clear that many doctors are simply unaware of the advances in treatment options or how to correctly determine which type of machine is indicated for a patient.

Reading the stories on this (and other) forums, I'm actually somewhat pleased with my journey so far. My insurance doesn't cover DME at all, so I've had to do my own research into what's available, and foot the bill entirely on my own. The good part of that is that I never have to deal with an obstinate/ignorant DME. Plus, I have a sleep Dr. that actually seems to care, and a primary care Dr. who will listen and take my input seriously. So far, so good.

Oh, I forgot to add - I'm sure you can still reach Bill Gates at billg at microsoft dot com. I haven't looked at the Bill & Melinda Gates foundation website in a while, but they probably have a "contact us" email address - give it a try! There's definitely a need for greater awareness of sleep apnea and the treatment options available.

[Ghost1958]

No by and large they dont care.
Much like working for a large company you are a number. If you croak there will always be another to replace you and the money stream you produce.
If youve known a doc personally, for years, he or she will likely care a little if they like your holiday ham or something.
Other than that, your a number that has dollar signs attached.
Dont kid yourself you are anything more to your Doc or DME.

[Weird Tolkienish Figure]

I guess this seems to be the norm. I have taken over my own treatment and have done a pretty good job so far. My next step is to get a pulse oximeter in order to make sure my O2 levels are at least above 90%. This is also why I get a little angry when all the vendors of CPAP machines refuse to give the clinicians manual when you buy a CPAP. They say that due to liability they can't a doctor needs to do the changes. God help me, if I had left it up to my doctor I would still be at 4-20 and I would have stopped using my CPAP due to the pressure being to low on the low end and way to high on the high end. I would have to pay for several visits with him just to narrow that number so it is tollerable. I am so thankful for this forum giving me the power to change my own settings and be proactive in my treatment.

To play devil's advocate, how many people post at this site or have knowledge of AHI and oxygen levels and leak rates, vs. how many people out there are using CPAP? My guess is that people with OSA and knowledge of things like AHI and cmH20 are, guessing, a single digit percentage of the larger community. I think manufacturers are rightfully concerned that laypeople could fiddle withe the machines and people could end up with bad treatment, etc.

Not to be "elitist" but we're a small segment of the OSA community who are informed. Most people just wear the machine because their doctor told them to, or they have to for work (truckers). So they have a clinician's setting to keep from the average joe from sabotaging his own treatment.

[AlanE]

The hot coffee syndrome aka liability

You change the settings and hurt yourself in the process, you sue the manufacture for making it possible for you to change the settings.


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