Respironics

Den,

I guess it's just a sad commentary on the world in general right now. Very few professionals are in their chosen fields to do what they were trained for, to help people, but rather for the $$$. I wonder how many young men and women have chosen to go to school for a career such as a doctor or a laywer because they truly have the calling, but rather just want to make the "big bucks." I would pray that isn't the case, but I am leaning towards the fact that it is.

I think it's so sad that rather than having doctors who want us to be pro-active and get involved to learn how best to treat our conditions, we have ones that deliberately don't want us to know things so we can rely on them so they can make the $$$ off of us. There is plenty of true illness and people who need these visits. I don't think anyone would starve if they helped patients help themselves by providing info or sending them in the right direction such as web sites like these.

I guess I was just naive when I said a few months ago that it should be mandatory that OSA patients be given an auto machine with software and have to take a class to learn how to use it. Like that might ever happen. Maybe there needs to be some type of organization or group we can join that helps people like us with monthly meetings and information, access to things that the doctors don't tell us or want us to know. If there is something like that out there near me, do you know of who they are and how I can get in touch with them? I would be really interested.

See, just another ignorant patient (me) if that's the cawe and I don't know about it.

Lori,

Johnny's new lists has links to user meetings.

cpaptalk-cpap-meetings.php

Sadly, there only seems to be 3 states listed.

I really believe that we "enlightened" users need to spread the word somehow. If there are other acquaintences we know, we should inform them about this/these sites. I know of at least two where I work (and probably a third one in the near future) who have been on CPAP therapy. I've been trying to pass the word to others as I come in contact with them. It's truly amazing how many people there REALLY are that have been prescribed this therapy (whether they are still using it or not is another situation).
Just think.....how many problems that get posted to this website alone and how we try to help each other. It can be a difficult therapy to get to work right for each of us. Then think about all of those others that COULDN'T get it work and then parked their machines......or those that are still struggling without the benefit of these forums. It would probably stagger our imaginations to know the real numbers.
One other thing that occurred to me yesterday was thinking about the "technology factor" again and why the doctors are resistant to prescribe the newer machines. Those doctors.....probably got their medical backgrounds when this therapy was in its infancy......and although they may have gone to seminars and such, their mindsets haven't changed much. The "NEW" technology has only hit the market in the last year or two and they are resistant to change (just as many people are).....then add the $$$ factor in it that I mentioned before and you've got the situation that we are in.
It's just gonna take awhile for things to change......

Spread the word, all you believers.

Den

Spread the word, all you believers.

You know what? I have two friends that I have to make sure know about this web site, and I know one of them has a brother who's been on therapy for seven years now. I will try my best to get the word out to anyone and everyone I know of that could benefit from it, or who knows someone who could.

It's like that old Faberge commercial for shampoo that said, "I told a friend, and then she told a friend, and so on, and so on, and so on..." I guess that's at least one thing we, ourselves, can do to get the word around that there is help out there besides just what the doctors and DMEs tell us.

I tell you, and I say it with the utmost sincerity, if it wasn't for the site, I don't know what I would have done, if I would have been one of those lost in the dark. I couldn't believe the amount of knowledgeable and willing people on this site that truly took me under their wing and answered what they've probably answered a million times before for other people like myself who came to this site lost, confused and knowing virtually nothing other than I had been diagnosed with something I knew nothing about. If each one of us could tell just one person and help them the way we've been helped by this site and the people on it, that's one less person likely to give up on a vital part of their healthcare and something that truly is invaluable to their futures.

Thanks for your input, Den.

Sleepless on LI wrote:

Spread the word, all you believers.

You know what? I have two friends that I have to make sure know about this web site, and I know one of them has a brother who's been on therapy for seven years now. I will try my best to get the word out to anyone and everyone I know of that could benefit from it, or who knows someone who could.

Lori,

The reality here is that most of us regulars are xPAP junkies who love to tinker & talk

I bet there are 100s of folk who come here, read the threads gather info, perhaps post a few times then move on. Possibly 1% (a guess) get infected & stay & play

I truly doubt that many others feel or will ever feel the way we do about exploring the use and effects of xPAP nor want to attend more that 1 or 2 meetings on the matter.

Cheers

DSM

Possibly 1% (a guess) get infected & stay & play

Then, OY, am I infected ...

For Sleepless,

Are you saying that because of no sofware support from Respironics that now your remstar auto w/ Cflex isn't any good anymore or just the fact that you weren't able to get software support.....

After talking with my DME and feeling the BS that seems that I'm going to get into ( like a small cancer creeping up on me ) and the anxiety as well I'm ready to just give in or better yet just say the hell with this all together.

Sleepless on LI wrote:

Possibly 1% (a guess) get infected & stay & play

Then, OY, am I infected ...

You & me both

Cheers

DSM

RAMBLINMAN writes:

For Sleepless,

Are you saying that because of no sofware support from Respironics that now your remstar auto w/ Cflex isn't any good anymore or just the fact that you weren't able to get software support.....

I don't know what part of my post makes you say that. I still use my machine every night AND my software every morning. I am very good with computers, if I do say so myself , and what I needed assistance with in the beginning with the software I got either from Tridens or Derek.

No, please don't give up on it. I was annoyed only that Respironics sells their software to the public and then won't provide support to those of us who are not home healthcare givers or doctors. I swear by having it. It is the only way, I personally believe, that you can keep track and adjust what is best for you. Don't take what I said the wrong way. DO NOT give up on the idea of getting your software, please. At least not as a result of something you think I said.

I am reading these posts from the perspective of being someone who got stuck, because of insurance requirements, with a machine that I like just fine but doesn't give me anything but compliance data. I would love to have the Encore Pro software and be able to be more pro-active in my treatment. But at this point I am stuck until I can find the money to get a better machine.

I am also reading this from the perspective of being a person who serves people with disabilities. Fragile people who can and have been exploited and over looked all their lives. I carry a real since of responsibility but I also have to face liability for the services I provide. I know from experience that companies like respironics have to look at liability issues when they sell their equipment. For insurance reasons alone they are probably advised not to sell or support the use of their software to anyone other than a physician or DME who by virtue of their training (sic) can take on the liability of monitoring the results of equipment usage. In other words the DMEs and doctors are in between them (respironics) and us when it comes to anything going wrong with our treatment. And they get sued less because of this arrangement.

This is all just guess work on my part. As I said I am just a by-stander gazing over the fence watching you lucky ones playing with your software and dreaming of the day I can play too. And yes I know this isn't playing. I am hoping that by the time I can afford a better machine and the software/card reader that comes with it that all these issues will be solved.

But then there's this argument (the emphasis is mine):

lola wrote:It's a little bit apples and oranges, but compare it to the technology involved in the treatment of diabetes, mainly Type 1, and arguably more complicated to treat. My brother's been Type 1 diabetic since he was 5, and the gadgets you can get now are amazing. Take insulin pumps - they use complicated algorithms just as AutoPAPs do, and store an awful lot of data, which can be accessed directly on the pump unit, and be downloaded and analysed on you or your doctor's PC. (And not via serial cable, heh.) ...And not only does the software allow input from the machine for tracking and management, it also allows output to the insulin pump. You can program in macros for certain mealtimes etc, and an interesting variety of other instructions can be sent to the machine to ensure optimal self-management. Diabetics, even without the higher-end tech, are trusted to self-manage with minor assistance from a doctor, adjusting their treatment as necessary - and getting your insulin wrong has rather more alarming consequences than getting your air pressure wrong. But imagine if sleep apnea patients were allowed the same. Software that would let you adjust your pressure/pressure range as you tracked trends in the data, with initial training from professionals who actually knew what they were talking about.

Is it that awareness of sleep apnea and related sleep disorders is just plain lower than that of other conditions such as diabetes, even among medial professionals? So there's less incentive all around for encouraging an active, involved self-management program for patients, and this then trickles back to the manufacturers?

BTW loved this:

...DME who by virtue of their training (sic)...

Sleepless on LI wrote:

Spread the word, all you believers.

I tell you, and I say it with the utmost sincerity, if it wasn't for the site, I don't know what I would have done, if I would have been one of those lost in the dark. I couldn't believe the amount of knowledgeable and willing people on this site that truly took me under their wing and answered what they've probably answered a million times before for other people like myself who came to this site lost, confused and knowing virtually nothing other than I had been diagnosed with something I knew nothing about. If each one of us could tell just one person and help them the way we've been helped by this site and the people on it, that's one less person likely to give up on a vital part of their healthcare and something that truly is invaluable to their futures.

If it wasn't for this site I'd have quit after the second night on BiPAP. You guys are awesome.

As for a company not supporting the product that it sells... well, that's simply bad business.