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

[DeepBreathing]

Maybe it's my personal charm and charisma but I've never had the types of problems you guys get. Or maybe it's that (most) Australian doctors have an egalitarianism which is somewhat of a national trait.

My RT was fascinated by Sleepyhead and asked where and how to get hold of it. She couldn't use it in the clinic setting but I think she was going to recommend it to other patients. And my GP has been asking me for advice on CPAP therapy to pass on my experience to his other patients.

I think if I was in a position where "Doctor knows best" I would be finding a new doctor pretty darn quick.

[Mark Douglas]

button!!!

No no no no no No no no no no No no no no no PLEASE No no no no no ***** "like" button! Enough of that ...... Uh place.....

[storywizard]

Thanks for all the proactive affirming replies, I shall carry on as usual...:-)

Storywizard

[Mark Douglas]

There is a boatload of money to be made in medicine by formula. The formulas may not make sense in a given situation, but overall they do, somehow... so this will continue, unfortunately. As for the DME who is angry about you treading on their turf, the protests are the last gasp of those who know that their jobs are on the line; they cannot deliver what consumers are demanding, and as more and more folk are diagnosed with apnea (and that is a given - it is something that increasingly drs are aware of and pushing for) the consumer voice will get louder and louder.

"No competent person fears another of person's quest for competence".
Me.

[PaytonA]

I do not have enough contact with the RTs at my DME to run afoul of any attitude from them. That was most of my problem with Apria in the beginning. I could not get hold of one to ask a question or 2. In addition several bits of information that I did get from them were totally incorrect. Since I have found this forum, I have no need to ask the RTs any questions any longer nor do I appreciate being given misinformation.

[49er]

I feel my current sleep doctor was initially threatened by my ability to access the clinician's menu and adjust my own pressure. But she seems to have come around and now seems impressed with my abilities

The only experience I had with a DME employee was when I asked an RT connected with her office some questions about my machine. He blamed my accessing the clinician's menu on my pap therapy struggles. Needless to say, that was the last time I decided to deal with him.

When I had my sleep study last year, the folks connected with the sleep center definitely seemed to be impressed by my knowledge and not threatened in the least.

Obviously, your mileage will vary.

49er

[Moriarty]

I must be lucky - or things are better in Australia...

I'm just on 3 years on CPAP. My Specialist is very happy that I manage it myself and is confident enough in my understanding and stability that my next recall is in 3 years time.

The difference here is the insurance companies only pay a pittance on CPAP. The maximum pretty well across the board is $500 for the machine only once every 5 years with no benefit paid on consumables.

As a result the equipment suppliers depend far more on the individual patient parting with their own money instead of seeing the Insurance as the client.

[Sleeprider]

I don't have a "sleep doctor" and I don't rely on DMEs to provide equipment. My primary physician respects my understanding of my apnea and need for equipment, and lets me dictate prescriptions to his staff. I use those prescriptions to obtain equipment through an in-network DME who is actually just a local pharmacy, or I get things online from the supplier list, and have gotten some machines off the used market.

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.

Best of luck, and when is the sleep study?

[storywizard]

Sleeprider wrote"
Best of luck, and when is the sleep study?

In four months...I am seeing my primary care doc today, I am trying to persuade her I need it sooner...

Storywizard

[SuperSleeper]

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!