Software is not for patients.

chunkyfrog wrote:Yep, you got 'punk'd'--most of us do in the beginning.
It really is VERY wrong, but until someone gets a HUGE amount of publicity for our 'cause', nothing will change.

Seems like a class action lawsuit might be a way to do that. I mean, in essence, by saying "you can't have the software" to patients they're eliminating competition for the CPAP techs. It would be one thing if there was a medical reason for it... I don't want eliminate competition for my x-ray tech, but clearly in this case there's no real medical case to be made for it, especially since all the other manufacturers can provide software. If anything, there's a case for the opposite.

Not having a CPAP machine yet has not stopped me from doing a great deal of homework. I have been diagnosed with severe sleep apnea and am currently awaiting final results and prescription based on my titration process study done 2 weeks ago. I don't know yet what to expect when I talk with my DME, but I am prepared for an argument if necessary. I have already decided that I want to be fully aware of my results so will only accept a machine with data logging and so far my preference seems to be leaning towards the ResMed S9 AutoSet and I have already obtained the software for that machine just in case.

I know many professions want to protect their "domain", but when there is a person/patient involved I don't think there is any such thing as too much information. I am willing to listen to and trust what my doctor tells me, but I run through a mental BS filter first and if in the end things sound reasonable then I am happy with what I am told. The problem comes in when a profession, dealing with such critical items as some else's health, and has only glanced over a report and then made a diagnosis. I don't expect my DME to spend the time looking at each day's results in detail, but I sure intend to do so. I am hoping that I may be able to work with my DME, GP, and sleep doctor to ensure optimal treatment of my condition, but I will take control if I don't feel that is happening.

I do believe that not only should be software be available to the patients, that it should be included with the machine itself upon purchase or rental of the said equipment. If the profession was truly concerned they can monitor changes to the machine along with compliance data anyhow; in the end if the data supports that the patient is doing well who should care if he/she modified settings to do so. I would happily sign a waiver releasing them from indemnity if I screw up my machine settings, but it sure would be nice if everyone could work together.

I do think there are some, in profession, that do have the best interest in the patient and not just their own pocket book. But the more I see the more I am thinking this may be a bit too wishful thinking.

tschultz..........Your attitude is correct..........you'll do well!

Excellent post, tschultz!

tschultz wrote:Not having a CPAP machine yet has not stopped me from doing a great deal of homework.

Good for you!

tschultz wrote:I don't know yet what to expect when I talk with my DME, but I am prepared for an argument if necessary. I have already decided that I want to be fully aware of my results so will only accept a machine with data logging and so far my preference seems to be leaning towards the ResMed S9 AutoSet and I have already obtained the software for that machine just in case.

Very smart to be prepared.

tschultz wrote:I don't expect my DME to spend the time looking at each day's results in detail, but I sure intend to do so.

Your expectation is reasonable. I wouldn't expect the DME to look at each day's results in detail, either. Your intention is absolutely the right way to go, imho.

As a side note, I'll mention that I think EVERY DME should look at the detailed data for several nights during the first week a new person uses the machine. The DME should pay special attention to looking closely at the leak rate to be sure leaks are well under control. Of course, that presupposes the DME has given the person a machine that records full data; not just "compliance" (hours of use.)

tschultz wrote:I am hoping that I may be able to work with my DME, GP, and sleep doctor to ensure optimal treatment of my condition, but I will take control if I don't feel that is happening.

Very good idea -- both parts.

tschultz wrote:in the end if the data supports that the patient is doing well who should care if he/she modified settings to do so. I would happily sign a waiver releasing them from indemnity if I screw up my machine settings, but it sure would be nice if everyone could work together.

Sure would be. Hope that will be the case for you. I really think many doctors (probably moreso than many DMEs) have no problem working with, and in large part turning the reins over to, a person who has obviously been educating himself/herself in a very intelligent way about this kind of therapy.

tschultz wrote:I do think there are some, in profession, that do have the best interest in the patient and not just their own pocket book. But the more I see the more I am thinking this may be a bit too wishful thinking.

With a bit of luck, your doctor will have a healthy, cooperative attitude about your taking a proactive interest in your own therapy. With even more luck, the DME you use will feel the same way.

Do, please, let us know how it goes.

Good luck.

rested gal wrote:Excellent post, tschultz!

tschultz wrote:Not having a CPAP machine yet has not stopped me from doing a great deal of homework.

Good for you!

I wonder how many people out there who are new to CPAP have no idea this, or any other SA forum, exists. I didn't, and no one at the sleep clinic, or doctor's office, or at the DME told me about it. I knew almost nothing about SA before I started therapy. I don't recall what prompted me to do a Google search for some aspect of SA that brought me here. But I'm sure glad I found it, even if it was 3 months after I started on the CPAP. This forum exploded my scope of knowledge about SA. Thanks to everyone for sharing and putting up with me!

tschultz wrote:Not having a CPAP machine yet has not stopped me from doing a great deal of homework.

As others have said, I think you're off to a good start. You already know some of the most important things to be looking out for, such as a full data machine. And you are using the time you have between now and the time you get the machine to educate yourself about both your condition and its treatment---good for you!

Now for my two cents on advice:

Do some reading up on your health insurance policy too (if you haven't already done that yet).

Make suer you know answers to all the following: How much does your insurance pay for durable medical equipment? How much does it pay for the supplies for durable medical equipment? How often does it replace the equipment or its supplies such as masks and filters? What happens if your first machine does not work out and your doctor decides that you have a medical need for a different machine? How does it define compliance? Which durable medical equipment suppliers (aka DMEs) are "in network"? Which are "preferred"? Will you have a choice of which one to use?

If you have a choice of DME, now is the time to find out so you can start comparison shopping among DMEs. Once you know what ones you can use, start calling around and asking questions about what machines they routinely provide to their customers. What their mask exchange policy is. Whether they have a respiratory therapist on staff all the time or only some of the time. Whether they focus on CPAP equipment or whether they're a more general kind of DME. Feel out what their customer service is like. And if there is a DME that's not too inconvenient to actually visit, try to stop by and look at some machines and masks and ask some questions if you can.

You might even want to look in the phone book under CPAP equipment and see if you can find a smaller DME that specializes in CPAP equipment and talk to them and ask them if they work with your insurance company. That's how I found the smallish, WNY-regional DME that I use: It was not on the list my insurance company reluctantly gave me, but I stopped by after seeing their ad in the phone book and noticed their address was right on my way to work. When I gave them my insurance card and ask, "Do you take this insurance?", they said they said did. And the price they cited was exactly the same deal that had been quoted by the DME's on the list the insurance company gave me. But there was a big difference: The DMEs I called all wanted to set me up with a non-data machine, and CPAPXpress gives all their customers a choice of a ResMed S9 AutoSet or a PR System One Auto as the standard CPAP machine. Both are nice, full data APAPs. Both of these full data APAPs are billed to the insurance company using the same code as the non-data CPAP machines the other DMEs wanted to sell me. During my first visit to CPAPXpress, they also let me look at masks and they answered a whole bunch of questions. And they did NOT push me to make a decision right away. I really liked that. I think I wound up going back about a week later and placing the order for my first S9, which has now been replaced with a PR System One BiPAP Auto---that I also got from them.

The more you know about buying (or renting) the equipment under the rules your insurance company uses as well as selecting the equipment that you want to use, the more likely you will wind up with a CPAP machine that you will be happy with.

Guest wrote:

ohammersmith wrote:So, I just got a ResMed s9 ... some nights I'll have a really high AHI and completely informally, those are the days I'm most tired.
... It's pretty clear from the report that some nights the mask is leaking horribly and some nights, not at all. This is consistent for days at a time.
I need to figure out why. Ideally I'd have the reports as near to real-time as possible so I can experiment & see what causes and/or limits the leaks.
... I get "Software is not for patients" because "I could set the pressure differently"...
I'm an engineer and I have all the data files from the card... I figure if I won't understand the reports from their software
So, what do I need to do to get a hold of this data?

Who said "Software is not for patients"?
You didn't say how severe your OSA is without CPAP. And what AHI values you've been getting with and without CPAP.
If your situation is serious enough, then I say that you can't afford not to get involved in your own therapy.
... especially if you're able to view the data on your own ... like I do.
But it is quite another thing to interpret it in the framework of a parametric change therapy.
And again another challenge to make your physician and DME cooperate with your home CPAP evaluation to converge on an optimum solution.

Beside the "Optimum Solution"that a patient could decide for him/her self, and change pressures accordingly, there is the doctor who has signed on the Sleep Study report. What about law suits if something goes wrong?

avi123 wrote: Beside the "Optimum Solution"that a patient could decide for him/her self, and change pressures accordingly, there is the doctor who has signed on the Sleep Study report. What about law suits if something goes wrong?

I don't understand the circumstances. Could you explain?

GumbyCT, I related to this post about "optimum solution".


Who said "Software is not for patients"?

You didn't say how severe your OSA is without CPAP. And what AHI values you've been getting with and without CPAP.
If your situation is serious enough, then I say that you can't afford not to get involved in your own therapy.
... especially if you're able to view the data on your own ... like I do.

But it is quite another thing to interpret it in the framework of a parametric change therapy.
And again another challenge to make your physician and DME cooperate with your home CPAP evaluation to converge on an optimum solution.

I sort of agree with the poster, even if I don't understand the "parametric change therapy" issue. The main question is if patients should be allowed, on their own, to change "clinical" values in CPAPs. For me, to get a CPAP machine under Medicare, my sleep doctor had to sign an "order" written on a form which starts: I certify that the above services are required, are medically necessary and are authorized by me for this patient..................

Do you agree?

avi123 wrote:GumbyCT, I related to this post about "optimum solution".


Who said "Software is not for patients"?

You didn't say how severe your OSA is without CPAP. And what AHI values you've been getting with and without CPAP.
If your situation is serious enough, then I say that you can't afford not to get involved in your own therapy.
... especially if you're able to view the data on your own ... like I do.

But it is quite another thing to interpret it in the framework of a parametric change therapy.
And again another challenge to make your physician and DME cooperate with your home CPAP evaluation to converge on an optimum solution.

I sort of agree with the poster, even if I don't understand the "parametric change therapy" issue. The main question is if patients should be allowed, on their own, to change "clinical" values in CPAPs. For me, to get a CPAP machine under Medicare, my sleep doctor had to sign an "obligation" written on a form which starts: I certify that the above services are required, are medically necessary and are authorized by me for this patient..................

Do you agree?

Let me say that I feel that if the docs/DME's did like they were supposed to then there would be no need for us users to take charge. But since the docs/DME's don't/won't we will. You don't have to if you don't want to. That is your call.

Also I don't feel the severity of the OSA has any bearing on whether I should get involved with my healthcare.

No one cares about me more than me

When a diabetic starts taking insulin, they have to learn how to test, do the math and titrate themselves.
Some patients first do this at an incredibly tender age.
The technology has reached a point where cpap users can be realistically trusted to manage our own therapy.
We are, after all, adults. How are we less trustworthy than a diabetic child?
Diagnosis may be traumatic, but until I'm drooly senile, I can do better than some bozo who doesn't give a ___ about my health!
When are they going to give us a %^&#@ break!

chunkyfrog wrote:When a diabetic starts taking insulin, they have to learn how to test, do the math and titrate themselves.
Some patients first do this at an incredibly tender age.
The technology has reached a point where cpap users can be realistically trusted to manage our own therapy.
We are, after all, adults. How are we less trustworthy than a diabetic child?
Diagnosis may be traumatic, but until I'm drooly senile, I can do better than some bozo who doesn't give a ___ about my health!
When are they going to give us a %^&#@ break!

Tell it!

idamtnboy wrote: I wonder how many people out there who are new to CPAP have no idea this, or any other SA forum, exists.

Bingo!

And when I went looking for information the people who are supposed to be helping me are actively keeping information away from me. How many more people are there who think they're in charge but just don't know what they don't know.

I've dealt with some DME's that are, honestly, the reason malpractice insurance exists. The first guy, six years ago, told me to 'never wash the tube, you'll never get it dry' and neglected to mention changing the mask, etc, etc. Never mind 'distilled' never crossed his lips... after five years the reservoir got grungy and "they don't sell that part". *sigh*

Fortunately I've got the best doc around now, for a couple years now. To the point where if I ask for something at the sleep study center or the DME and they balk, as soon as they hear who my Dr is, they fall in line with "ooh, her, she's good. Here you go."

Apparently software is not only not for patients, but is also not for dealers.

I asked my dealer to set up C-flex+ on the loaner that I'm using for an at home titration study. I read about it here when reviewing the machine and saw the settings on a video online.

She did not know that the machine was capable of C-flex+. She kept saying that's not available on this machine. So I asked her to go into the clinic menu and showed her the setting, which she apparently had never noticed before. She set it up so I can use it. Finally. When she asked how I knew about the C-flex+ being available for this machine, I told her about some online videos that I watched, that reviewed all the features. Too bad she didn't see the same videos.

It amazes me how often I know more about a product as a consumer than the so called professionals do.

My doctor says I know more about diabetes than she does, (and she's right). My powerchair dealer says I know more about my wheelchair than she does and I've only had it for a month.

Why don't these people do their homework? When I was in a service profession, I read all the manuals and everything I could get my hands on, so I could do my job well. It seems that professionalism has gone by the wayside. Caveat emptor

I'm taking control, now, though I hadn't before. But honestly, I'm having to become a freakin' expert at this stuff... sure as they say, if you want it done right, do it yourself. Full-on type-A control freak mode has been engaged... and you don't want to get near the spreadsheets I have when that happens, you'll have a hard time escaping the gravity well that they create.

Love this!

I totally agrre with the comments on this thread. I Got my S9 Elite by telling the DME what I wanted. I walked in with a shopping list and the prices they need to be charging. Well, they are difinately not Wal-Mart, they did not price match but after i recieved the bill I contacted my insurance company and the insurance company made a few changes to the DME's charges. Items listed at $400 suddenly were changed to $100. There was a charge of $50 for teaching me how to use it and the insurance said it was nto a qualifing charge and told me to tell the DME to remove the charge. I contacted the DME billing department and they removed the charge.

When it came to the software and clinician manuals I went out and got them the day after I got my machine. When the DME said they call me when they need the card, I told then I would email then the data. After a few strange looks they understood and I haven't heard from them since.