learning the hard way...not what you think, a rant!

[GrammaBear]

I was diagnosed with OSA in 2004. Had an initial 5 minute meeting with the sleep doctor. Haven't been back to any sleep doctor since then, nor have they called me, and no RT or any other "professional" has contacted me about my sleep apnea since then... (except for the DME clerk who wanted me to purchase new supplies from them). But even they quit calling me after about 6 months, and ever since I found out that I could get my suppliers cheaper online, I've never walked into a brick-and-mortar DME, and I get all my supplies from Supplier #1 on our Supplier List for about the same price as I was paying even with insurance back then, minus all the hassles of dealing with insurance.

So, I've been "self-treating" since 2004, and we started this forum about a month after I received my CPAP machine. Folks on this forum have helped me immensely with my treatment. My sleep doctor? Not one bit.

I have a feeling that if I were to tell that old sleep doctor that I've been "self-treating" and can titrate my own machine using SleepyHead software, he'd have a fit and claim that only a properly-trained medical "professional" can do such things. He is obviously so very concerned about my health that I haven't heard from him in over 10 years.

Yeah, I'm a "CPAP Radical Subversive" - titratin' away with my machine and renegade SleepyHead software. Somebody better stop me before I hurt myself!

Love your attitude
I've been tempted to ditch the local DMEs myself, just need to find the courage to do it.

[storywizard]

Sleeprider wrote:
"Storywizard, you have a particularly difficult problem in that you need a very expensive machine to treat your complex apnea, and the only way that can be justified is for you to have a full sleep study with titration on CPAP, BiPAP and ASV. Your real problem will quickly become apparent when the technician applies CPAP pressure and watches you respond with 20+ AHI of central apnea. He will try Bilevel and see the same result until they reach ASV which will be amazing. I guess they have to discover for themselves what you and I already know. Nothing you can do about their conceit and contempt for you the patient, unless you can cut the sleep specialists out of the equation as I have."

I would go my own way, if I felt confident that I knew what I have...It would be almost impossible for me to get an ASV machine in Canada without an Rx...so I have to hoop jump for a while....

Storywizard

[SuperSleeper]

That was Sleeprider that you quoted, not me. (just to clarify)...

[DariaVader]

My sleep doc is a fellow apneac, and WRT fiddling with the settings, his only request is that I pass it along to him as info via the mychart "email" system so that he can in turn make it official to the DME. When I changed the EPR and let him know, some informational emails ensued, but nothing like "I know best" or "I'm the doc here" He says that it is nice to have patients that are informed and that he learns from the handful who are.

The DME... the initial RT who handed me my cpap and did the paper signing etc was also a fellow apneac, but way more like described and officially disapproving of renegade apps like sleepyhead, patient control of clinicians menu or anything else that threatens her job. I got a sooner appointment by going 25 miles to her "class" of 6 for my "orientation" wouldnt choose that again. When I needed to change masks, the first RT gave me a lot of flack, but I called back and scheduled an appointment at the facility closer to my home and got a 1:1 with a young fella who was fascinated by sleepyhead, and by my proclivity for tinkering! The good ones are out there, and good and bad work for the same companies.

I will definitely continue using the in-network insurance route... for me it is covered at 100%. I pay for this coverage, but it is worth it to me.

[trailrider]

I took a look at the RT curriculum from our local college. After spending 3 years plus about $15K I can see why some of them may be upset with us "tinkering around" with the machines. To them this is a highly technical medical field: pulmonology, respirology, etc. In the hospital setting they support the ventilators in the ICUs and the anesthesiologists. They run the sleep study labs and do the titrations. They identify and flag the events, and run the stats for the doctor to make the diagnosis.

But these schools pump out more students than the institutions can employ and they have to make a living somehow. So up goes the shingle as a DME. For each of us apneacs, at the beginning the DME invests a lot of upfront time doing the fittings, explaining the concepts and making sure things work. Many patients are elderly whose personal traits may require to be dealt with in simpler terms. Some are frightened and distrustful of the very technology that will help them. Only a few (like most here) will become interested in their own therapies and want to learn more.

I find it interesting that many of the people on here have STEM or technical backgrounds. We're the sort who like to understand how a machine or software works. We are used to algorithms and decision trees. Many others are not. Most of the RT's I have met seem to be more focused on institutional and business concerns (infection control, Rx compliance, product suitability and upselling). I don't think many of them have taken a machine apart and know how it works; just that it does. So patients who are technically aware make them very uncomfortable. remember that they can be held liable if we do something wrong and can prove that they condoned it (English common and tort law).

So I cut them some slack. There is no equivalent technologist in the endocrine field for diabetics, so patients are used to working on their own treatments in that field. RTs are not used to that.

[DariaVader]

<snip>

Only a few (like most here) will become interested in their own therapies and want to learn more.

<snip>

I find it interesting that many of the people on here have STEM or technical backgrounds.

<snip>

So patients who are technically aware make them very uncomfortable.

<snip>

I find that interesting as well, and also I note that many of my coworkers have apnea. Sedentary lifestyles may be a contributing factor, but some of my coworkers have been long time apneacs - from childhood, and are sedentary because of the apnea (chicken/egg classic) and a preference for sedentary work is part of the thing that made us nerds and techies in the first place

people (patients) who are technically aware make nearly everybody else very uncomfortable

[Quila]

I have learned today that I have been wasting my breath with doctors and techs, thinking I was helping them or at least understanding my journey. I will now not say a word about data, just tell them what they want to hear and get my own machine as soon as is possible.

I think I may have just gotten lucky with the DME I'm dealing with. The lady I've been dealing with there has been encouraging me to ask questions from day 1. I even brought my notebook into my appointment today to show her what I've been looking at since she hadn't seen SleepyHead before. She's been great to deal with.

[storywizard]

I was in seeing my GP yesterday, she was appalled that the "new" sleep doc had ordered me back on CPAP...with a titration study maybe more than 4 months away..Anyway we have requested a titration study at the clinic I had my original sleep study at, she put in the data from my last few nights and here's hoping...

She also is willing to write prescriptions for xPAP when I need it, I just have to train her....

oh boy...

Storywizard

[Sleeprider]

Got your eye on the target, now you just need a clear shot to pull the trigger.

Your sleep doc is a quack.

[storywizard]

Got your eye on the target, now you just need a clear shot to pull the trigger.

Your sleep doc is a quack.

you can say that again...my poor GP...we both thought I was on to a good thing...

Apparently there are folks in my town who like the data, I just have not meet them yet...

Storywizard