PC Doctors and RT's and Testers

[DoubtFire61]

I'm now starting to notice a really pronounced disconnect in the interactions between the three professions involved in Apnea treatment. It's hard to decide who to point the finger at.

The Testing facilities seem to be the initial culprit...they do the testing and find that you're screwed up...so they Rx a brick with a 20 pressure setting and then they wash their hands.

I think most PC docs are not really up on (or in to) the whole technical side of Apnea treatment...they accept the recommendations of the testing group and play along unless the patient says something.

The RT's are kinda in the middle, but not. They have the most experience with the machine and the results. So they know darn well the pressure settings of 4-20 have almost no chance of success. And yet they won't speak up unless the patient complains.

After my complaint about 4-20, the RT contacted my PC and they adjusted it to 4-18 last night....(from the 8-17 I'd just used with an AHI of 1.78), so I put on the gear and turn it on and I'm bloody suffocating! I look and see 4 as the current pressure! 


WTH?  

So I kill the machine, go back in and see I'm at 4-18....grumble...grumble...set...set...8-17...start over...1.09 AHI last night with a max AHI of 4...pretty darn good I'd say.

So...I do an end around play...call my PC this morning, ask if they'd gotten a call from the RT...and told them that 4-18 won't work, and I'm set to 8-18 and my AHI was 1.09, gave them what my real max pressure was for the night...asked them to contact the RT...so they won't come in and reset me at will.

What a screwed up system..seems the patient has to know more about the treatment than the professionals involved.

{stepping off of soapbox}

[Maggie]

What a screwed up system..seems the patient has to know more about the treatment than the professionals involved.

{stepping off of soapbox}

. . . especially when the RT is more concerned with providing the client with every minute detail of her marriage breakdown - which had come as no surprise to the patient!  At that point I took my machine which she persistently tweaked so that it almost blew my head off the next night, learned how to get into the clinicians mode and dealt with everything myself - with a lot of help from our friends here.

Nothing like a good rant to make you feel better!

[Fats Drywaller]

Yes. Welcome to The System We're Stuck With. It's a mess.

Relatively speaking, most of us here are doing just fine, even the ones who are at the beginning their CPAP adventures, when you compare us to all the sleep-apnea patients Out There who don't have any support group or advocacy group or place to go for advice ... in other words, the ones who don't know about Apnea Board or maybe the American Sleep Apnea Association (which seems like a good group of folks although I don't know because I've had no involvement with that organization yet) or any other resource. Sleep apnea seems to be one sub-category of medical conditions for which a support group is needed more than usual. In other ways we don't have it as bad as, for instance, cancer patients do, but OTOH we are frequently given wrong advice, wrong diagnoses, wrong treatments, and wrong equipment by various doctors and various supposed so-called "therapists" who aren't really therapists but are supply sergeants instead.

I suspect that this whole situation must be very unusual among medical specialties. Imagine if all medical domains were as screwed up as this one has become. Heads would roll (or so one hopes).

It doesn't seem like there's much that can be done about the problems, at least not in the USA. In addition to the poor patients/victims, there are three groups of players in the game: the insurers (including Medicare and Medicaid), the sleepydocs, and the DMEs. Each one has its assigned (sometimes apparently self-assigned) role to play, and each one plays it, and it's just generally assumed among all of those Establishment people involved that everything is hunky-dory. But actually the whole system is very broken, from the point of view of the patients.

[Sleeprider]

As I recall, you were first dispensed an Airsense 10 CPAP set to 13 cm and NO DATA. We advised that you return that machine for an Autoset. It appears they gave you the Autoset at 4-20 pressure rather than try to give you a range that resembled your actual needs. Clearly if you have used a machine set to a reasonable range of 8-15 cm based on your titration, or perhaps if you would have posted some charts sooner after getting the Autoset, we could have spared you this experience.

[Fats Drywaller]

But, but, but ...

The System shouldn't have given him an inferior machine to begin with; instead, it should have given him a good APAP machine along with personal, customized instructions on how to use it, how to configure it (including the so-called advanced "clinical" settings), how to get data from it, how to examine the data and go from there ...

Unrealistic to expect any of that from a DME or a sleepydoc? Yes, absolutely, the way things are now. And that's what we're stuck with.