Rant mode on

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
tony22
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Rant mode on

Post by tony22 » Mon Jun 02, 2008 1:17 pm

Can someone explain to me why the xPAP industry seems to want its patients to think that they have some kind of problem that laypeople just won't understand?

In particular I'm talking about the software made by the manufacturers for analysis of treatment data. I called cpap.com to find out if they have ResScan 3.5 yet. They said they do not; they are still carrying 3.3 (which I am using). Okay, I decided to call ResMed to see if 3.5 has been made available to the U.S. market.

It is currently available in the U.S. market. I asked the nice lady if she could identify a sales location (online or otherwise) for its purchase. She put me on hold for a bit, and then came back and asked if I was a patient or clinician. I was honest and said patient, and she started treating me like I was a helpless person trying to dismantle a neutron bomb. "Oh, that's just for clinicians. It's meant for their use." I explained that I am very involved in understanding my own care and treatment, and that so far have found 3.3 to be essentially a trivial application to understand. She actually paused at that point as though she was surprised that a subhuman could figure out how to use their oh-so-complex software!

I've been participating here long enough to see that this is not an isolated case. Many of you out there have written stories amounting to the same thing - from your DMEs and physicians. We're too unenlightened to even participate in our own treatment. "Oh, you can't actually be told how to use the very nasty hidden features of your xPAP! You might snore!"

I just don't get it. I have other severe diseases (Type 1 diabetes and cardiovascular) in which my docs can (and are happy to) work with me as a knowledgeable partner. I can do irreversible damage to my body with a mistake in my insulin dosage. I can buy a device that will let me asses my own A1c - and my doc is confident in my understanding how to deal with the results - but the xPAP industry (medical and commercial) wants us to think this is some kind of black magic. What's wrong with these people?


Guest

Post by Guest » Mon Jun 02, 2008 1:29 pm

Some just can't live with the rules

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NightHawkeye
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Post by NightHawkeye » Mon Jun 02, 2008 1:56 pm

Think mind-set, Tony. It wasn't very long ago that you had no legal right to any of your medical records. That mind-set still pervades the medical community.

Some of the details which directly address your question are as follows:
1) The FDA does not require a prescription for any xPAP device (or, for that matter, most non-invasive medical devices).
2) The FDA "allows" each manufacturer of a "medical" (wink, wink) device to specify that it be available by prescription only, if the manufacturer cannot provide adequate instructions for lay-person use of the device. (Ever wonder how the same exact oximeter can be sold both as a "sports" device and as a prescription only medical device?)
3) Product liability laws for prescription devices provide substantial protection to the manufacturer. All instruction for proper use is ostensibly provided by the prescribing physician. (If you didn't get adequate instructions, then take the matter up with your physician. )

As for the software, I suppose the thinking (if there is any) at ResMed must run along the line that by making the software available to the patient, then they would need to make full instructions available to the patient also, but, by definition, they can't do that.

On the other hand, maybe it's just draconian control of information flow, the way many such things are handled within the medical community.

Regards,
Bill


alnhwrd
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Post by alnhwrd » Mon Jun 02, 2008 2:09 pm

Two words Tony: Power and Liability

If they know it and you don't, it keeps you dependent on them. They have power over you, which for some is why they get up in the morning and come to work, just so they can feel important. They can also keep you coming back again and again to make adjustments for you, billing you and your insurance each time. The medical profession has lots of caring and kind people working in it who want to serve their patients and help improve people's lives, and God bless them for it. But there are also a bunch of (insert degrogatory expletive here) who are either just collecting a paycheck or feeding their ego.

It is also unfortunately true that there are loads of people in this country who will sue anyone at the drop of a hat hoping for a big payday. So if they tell you how to track your data or adjust your own machine, and you do something stupid they could still be sued. Very frustrating.


tony22
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Post by tony22 » Mon Jun 02, 2008 2:09 pm

Well, it blows .

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Goofproof
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Post by Goofproof » Mon Jun 02, 2008 2:23 pm

It makes it easier to collect the eggs, if you keep the door closed on the chicken coop.

The government counts on us being sheep, we are taken in all year for daily trimming, and we get a main shearing on April 15.

We work to make money, they work to take our money. It seems that there are more of them than us, or they are better at fleeceing us that we are at producing fleece. Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

skjansen
Posts: 187
Joined: Mon May 14, 2007 4:05 pm
Location: Houston

Post by skjansen » Mon Jun 02, 2008 2:25 pm

I know my DME and doc did not even tell me I could access my own data off of my machine. They said I had to come back to them and have them do it. I was furious when I found out this was not the case as I think they just wanted me to come back so the could bill my insurance comapny for a visit. I went several years without having accurate data that could have really helped me get better treatment. Turns out I learned how to use my machine from the wonderful people on this forum.


schleima
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Joined: Fri Apr 25, 2008 9:56 pm

Re: Rant mode on

Post by schleima » Mon Jun 02, 2008 2:58 pm

[quote="tony22"]Can someone explain to me why the xPAP industry seems to want its patients to think that they have some kind of problem that laypeople just won't understand?

In particular I'm talking about the software made by the manufacturers for analysis of treatment data. I called cpap.com to find out if they have ResScan 3.5 yet. They said they do not; they are still carrying 3.3 (which I am using). Okay, I decided to call ResMed to see if 3.5 has been made available to the U.S. market.

It is currently available in the U.S. market. I asked the nice lady if she could identify a sales location (online or otherwise) for its purchase. She put me on hold for a bit, and then came back and asked if I was a patient or clinician. I was honest and said patient, and she started treating me like I was a helpless person trying to dismantle a neutron bomb. "Oh, that's just for clinicians. It's meant for their use." I explained that I am very involved in understanding my own care and treatment, and that so far have found 3.3 to be essentially a trivial application to understand. She actually paused at that point as though she was surprised that a subhuman could figure out how to use their oh-so-complex software!

I've been participating here long enough to see that this is not an isolated case. Many of you out there have written stories amounting to the same thing - from your DMEs and physicians. We're too unenlightened to even participate in our own treatment. "Oh, you can't actually be told how to use the very nasty hidden features of your xPAP! You might snore!"

I just don't get it. I have other severe diseases (Type 1 diabetes and cardiovascular) in which my docs can (and are happy to) work with me as a knowledgeable partner. I can do irreversible damage to my body with a mistake in my insulin dosage. I can buy a device that will let me asses my own A1c - and my doc is confident in my understanding how to deal with the results - but the xPAP industry (medical and commercial) wants us to think this is some kind of black magic. What's wrong with these people?


tony22
Posts: 94
Joined: Mon May 05, 2008 10:37 am

Re: Rant mode on

Post by tony22 » Mon Jun 02, 2008 3:47 pm

schleima wrote:You've expressed my concern exactly. I too am a Type 1 diabetic, on an insulin pump with a continuous glucose monitor. I am used to taking responsibility for my health on a day-to-day basis (or night-to-night, as the case may be). I take real issue with this untrue notion that somehow this breathing machine is more dangerous to tweak than insulin and BG levels.
I'm with you, schleima. For people like us it's almost funny. And alnhwrd, I agree with you completely, yet at the same time there are docs who work in partnership with their patients. I may be an odd case, but in no way do I feel any less of a need to see my specialty docs who treat me as an intelligent consumer. If anything, I look forward to my visits with them. Then again I haven't had any cause to sue anybody yet .

schleima, do me a favor and PM me. I'd like to know what continuous monitoring system you are using and how it's working out.

alnhwrd
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Location: Hood River, Oregon

Post by alnhwrd » Mon Jun 02, 2008 5:43 pm

Yes Tony, you are right, lots of good docs, and other medical pros, who really want to help and work with their patients. They are shining stars in the field. Thanks for pointing that out.

It really does seem strange that we can drive cars, boats and planes, operate heavy machinery, and do a host of other things without harming ourselves, but people think we can hurt ourselves if we track our data and adjust our own machines.

TDog
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Joined: Fri May 02, 2008 8:54 pm

Post by TDog » Mon Jun 02, 2008 6:39 pm

Goofproof wrote:It makes it easier to collect the eggs, if you keep the door closed on the chicken coop.

The government counts on us being sheep, we are taken in all year for daily trimming, and we get a main shearing on April 15.

We work to make money, they work to take our money. It seems that there are more of them than us, or they are better at fleeceing us that we are at producing fleece. Jim
amen brother. I just saw a report on TV that they're spending 30 million in east BUFU somewhere to search for a woodpecker they thought was extinct. All the while, the IRS constantly harasses small businesses and average citizens. Trust me, having dealt with the IRS as a business owner, you are GUILTY until THEY say you're innocent. It's no wonder the elites hate the 2nd amendment so much. Sooner or later, people are going to turn off american idol and realize how out of control Gov't has gotten.

Oh well, sorry for the off-topic rant!

Shilohcane
Posts: 78
Joined: Mon May 05, 2008 4:34 pm

Post by Shilohcane » Tue Jun 10, 2008 10:48 am

tony22

I found your thread on my same rant about ResMed's software ResScan 3.5. Had I known they wouldn't sell me their software before I got my S8 AutoSet II I would have never gone with ReScan.

I will start sending them e-mails and telling them what I think but if I had it to do over I wouldn't have got a ResMed that doesn't give me access to software.


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DreamStalker
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Post by DreamStalker » Tue Jun 10, 2008 11:27 am

Shilohcane wrote:tony22

I found your thread on my same rant about ResMed's software ResScan 3.5. Had I known they wouldn't sell me their software before I got my S8 AutoSet II I would have never gone with ReScan.

I will start sending them e-mails and telling them what I think but if I had it to do over I wouldn't have got a ResMed that doesn't give me access to software.
You can buy 3.3 here : https://www.cpap.com/productpage/2596

I doubt there is much difference between 3.3 and 3.5

Is there some kind of incompatability between 3.3 and S8 II's?

EDIT: Uhhh ... never mind, I just located the answer to my own ignorance



President-pretender, J. Biden, said "the DNC has built the largest voter fraud organization in US history". Too bad they didn’t build the smartest voter fraud organization and got caught.