New CPAP users: Some Common Questions Asked And Answered

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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geoDoug
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Post by geoDoug » Sat Aug 18, 2007 11:54 pm

Babette wrote:I'll take O2 over sex any day....
Babette wrote:Sex with old men is HIGHLY OVERRATED....
Both of those would make excellent T-shirts.

Old people sex? Ewwwwww...

Doug.

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Babette
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Post by Babette » Sun Aug 19, 2007 12:02 am

I walked in on my GRANDPARENTS when I was around 4th grade. The worst part - seeing bony 78 pound, 80-something year old grandma in the black lace negligee....

I think my distaste for old people sex stems from that childhood trauma... And now that I'm old, and my choices are thus limited, I'm thinking a beer and a good book looks MUCH BETTER.

LOL,
B.

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geoDoug
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Post by geoDoug » Sun Aug 19, 2007 12:45 am

Babette wrote:I walked in on my GRANDPARENTS when I was around 4th grade. The worst part - seeing bony 78 pound, 80-something year old grandma in the black lace negligee....
IMAGE!!!!! NOOOOOO!!!!! MUST. GET. BRAIN. BLEACH.

Doug.

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Post by Guest » Sun Aug 19, 2007 2:51 am

My opinion:

I don't think there is anything "taboo" about talking about the software. While I don't and can't speak for anyone I'm no different than you or anyone else here other than a customer,

I don't think the problem is with cpap.com or Johnny. In fact if you were here in the early days you'd know they were one of the first pioneers or advocates to make software available for patients, one of the first to offer those of us WITHOUT medical insurance a realistic affordable way of purchasing our equipment without being raped and ripped off like you see every day with the brick and mortar DME.

However, I'm sure they also have to abide (legally) by the rules and regulations imposed by our government and the FDA. Well the FDA is nothing but a group of doctors there under the guise that they are protecting us.

Well we all know what that co$t$, they impose rules and regulations to impose their will across the land, if they could they would strip every alternative therapy option away they could.

Who do you think those FDA doctors talk to? Other doctors. If you are coming out with a new product or drug as a company what do you do? You hire a doctor. Why? so they can use the good ole boy network and get your product approved. You know what those other doctors need for approval.

When it is all boiled down it is all about politics and money. Look at the HME market, it is made up of DME "dealers" and conglomerates. I seen that idiot on MadMoney the other day recommending that everyone move their money out of financials and buy Apria stock. That was because he was totally wrong on the Real Estate call and Fed rate cut a few weeks before he went off the deep end on youtube. The week before he was totally against any kind of rate cut and said screw the lenders, sell your stock, let them go bankrupt. The guys an idiot, a sham artist and a flip-flop man. He is encouraging investors to invest in a company that WE all know here rips us all off, creates a model for other DME's to follow and do the same. But I guess that whore only cares about money and profit and ripping people off as he is not on the receiving end of it.

If there is anyone here that is taboo on that subject and needs good kick in the groin it is probably Respironics, ever since they got that new "doctor" running that company the patient and their rights have taken a seat in the waiting room for an extra hour or two.

I've done software before, I bet it wouldn't take them more than a week to remove the ability to "write" prescriptions from the EncorePro software and come up with a "Patient version" of EncorePro. The old software didn't have that ability, why wasn't it a problem back then? For many years you could download it for free.

So you have to apply some logic when you look at this, our host has to follow the rules, if Respironics says they cannot sell the software, then he cannot sell the software, if he DOES he risks his dealership or ability to sell those machines. So what would you do? Risk your ability to sell you bread and butter for some $99 software? Not too hard a decision as I see it.

And you can be assured Respironics has their trolls reading and scanning these boards. How do you think their support staff learns about their own machines?
If there is a problem they will find out about it here first.

I've been here long enough to read between the lines, it is not a taboo topic with our host, they would sell it to you if they were allowed to. It is that simple.

At the same time, they cannot allow posts appearing on this board telling you were you can go buy it either, because if they did that it would be the same as selling it themselves.

If you find it for sale, DON'T be STUPID and post it in the forum, that is the dumbest thing you can do.

If you want to help someone out in obtaining the software and you know where you can buy it, send the person wanting it a PM message. But I wouldn't even do that if I seen they are a newbie and only made 1 or 2 posts as it is probably just the trolls fishing for the source so they can eliminate that site also.

But I've never seen our host selling that software for $259 or $279 like those other sites, they are flat out just ripping you off, software isn't worth that much, I mean it is good but not that good.

In a way I almost wish it does go away, because once it does some creative sole with software writing ability will hack the card and write their own download software to read the card data and it will probably be much better and more compatible than EncorePro ever was. It has always been a PIA to install.

Do you guys really need 2-3 pages of meaningless compliance data? I don't.
Do we really need to have our data stored in a SQL database? I don't.

I just want to know how many AI's and HI's and leaks I had say over a week so I know if I'm either improving or getting worse.

Yeah trend reports are nice but after a while you even get bored with those. I admit those graphs are great and it is nice to see if you are trending up or down with therapy, especially that AHI vs Pressure report.

Maybe we should setup a separate "Marketing" poll for that creative software sole asking if visitors here if they would be interested in:

Purchase the reporting software (read only from the SmartCard) if it were available for $99 a copy?

I know I would pay $99 that for a copy without hesitation, that is less than I've paid for it in the past. I'd even be willing to bet that Johnny would be interested in offering it for sale on cpap.com if it were "Read Only" and didn't write "Prescriptions" and violate his dealer agreement.

Because as patients we cannot really write "Prescriptions". EncorePro 1.8 allows you to write prescriptions. So it goes back to what I said before, Respironics is the one at fault here, in my opinion they shot themselves in the foot, that decision was about as bright a move as that other company down under's move in doubling the price we have to pay for equipment all under the false guise they would offer us patients better service.

Well we have all seen how well that plan worked out for us patients now haven't we.

At the same time, I would bet money the Respironics reps are hearing at every stop at a doctors office "I don't want my patients having those reports", they find out the truth about their therapy progress they may want to sue me for being stupid

I recall some genius here thought it would be such a great idea to SPAM Respironics support lines and phone lines with complaints about the software, oh I remember it was losing a few days worth of data. Let's all call them, they will fix it!

Yeah they fixed it alright, oh what a smooth move that was, look what it did for us? all that little tactic did was get the software completely pulled from the marketplace, from being sold anywhere.

I say we support the creative software hack that comes up with an alternative solution and you won't have any more hassles obtaining software for your machine. They can never completely pull that software, they have too many machines out there using that card going back 2-3 generations of machines. There has to be millions of machines out there by now, most are using that very same SmartCard.

Get the control of the software out of the doctors dictating who can have it and out of the FDA's control and it will be freely available most and likely at a lower cost.

Once that card is removed from the machine it is simply a memory card, a SIM card, it is no longer a medical device. Just like the SIM card found in your GSM cellphone, it has CPU, memory and a real time clock on it. How do you think the date & time are displayed on your cell phone. That clock gets set by the network but it is kept on the phone. Back in 1992 there were only 2-3 cellphones equipped with a clock chip, Murata, Panasonic and Mitsubishi. Motorola & Nokia the biggest players in the market didn't have them it wasn't until those came out with SIM cards did they have that feature. Only difference between that SIM card in the cellphone and the SmartCard is the latter has more plastic like a credit card surrounding it, the gold colored chip is the only part that is the meat and potato's.

Although I hate them, one thing nice about using that technology, is once you remove the card from that machine you are no longer under the thumb of the FDA, doctors or Respironics. They would have to prove you were "writing" to their card before anything could ever be done. You as the patient and owner of the card you can decide if it gets erased or not. But if you only READ that card and the data contained on it save it to a computer generate a report from it, there isn't squat that any one can do about it. That is why I say support the software hack.

Figure it out, how many people have the software and how many want the software?

That is your market. If you want a new A-Flex machine, you will need 1.8 or higher to read data from it OR hopefully a creative software sole will come up with an alternative.

Programming your machine via the keypad is still the most reliable way in my opinion. As long as your finger still works you have a way to program the machine.

I think a poll should be along the lines:

Do you now own or use the reporting software? - Yes/No

If the software was available to READ the data from your machine,

Would you purchase it if it were available for $99? - Yes/No

------------------

That would give that creative software sole an idea of what interest there would be in creating such software. You never know, even those that don't want you to have
it may find hey that is pretty good stuff and even them yoyo's would buy it.

Let's see if I sold 10 copies a week (taking off my socks), that is like $52K per year... if I sold like 100 copies per week, that is pretty good chunk of change.

How many machines did Resmed recall recently? Think it was around a year's worth of machine about 300,000? and that wasn't all of them globally, only a certain batch. I think Respironics sells more machines than that globally.


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lilsheba
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Post by lilsheba » Sun Aug 19, 2007 5:27 am

Wow I hadn't thought about that but yeah...erectile dysfunction gets ALL kinds of attention and sleep apnea gets none. For god's sake what is more important here?

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RosemaryB
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Post by RosemaryB » Sun Aug 19, 2007 9:32 am

geoDoug wrote:
Babette wrote: Old people sex? Ewwwwww...

Doug.
Hey, Doug! I suspect that a majority of us on this board fall into this age category. You might show a bit of sensitivity to us. None of us wants to feel that we are digusting.

If you are fortunate and live long enough to get old, I hope you will feel good about yourself and your body. You may be fortunate to have a partner who you love that's been with you a long time.

Now, a child walking in on adult relatives of any age having sex is another matter. I think that most kids would feel yucky about it.
- Rose

Thread on how I overcame aerophagia
http://www.cpaptalk.com/viewtopic/t3383 ... hagia.html

Thread on my TAP III experience
http://www.cpaptalk.com/viewtopic/t3705 ... ges--.html

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socknitster
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Post by socknitster » Sun Aug 19, 2007 9:42 am

Snoredog,

I agree completely! All I want is to know my ahi and leaks, everything else is gravy. I don't even know how to change my pressure with the software. I have made adjustments on my machine on own for several reasons: my docs don't understand or don't care and my needs have CHANGED. Why continue with the uncomfortable pressure of 16/12 when my machine is titrating me now at 11/9 due to improvements via meds and surgery! If I am educated about the whole thing and have a good machine, I think it is ridiculous to even take this away from me. Diabetics are injecting themselves with insulin on an as needed basis--are they smarter than me?

The controversy I spoke of had to do with priracy. I ultimately edited my original post because it was making folks uncomfortable. I know Johnny Goodman only wants the absolute best for us--but if anything I say or do could get him in trouble, I want him to shut the thread down. I can't claim to understand the legal bullshit going on between respironics and us, the underdogs.

If I had access to ahi and leaks only and no abitlity to change my machine, I would be TOTALLY OK WITH THAT. It would clearly mean that I would have to consult with a doc and bang them over the head with my needs, but I would accept that. My machine does display these things but the lcd display is NOT RELIABLE and I need the software to see the specifics. And I want to know night by night (not an average of seven days!) in case I try a new sleeping position or mask or some other adjunct to my treatment. I will need to know right away if what I tried is working or worsening my treatment.

I hope some IT genius can come up with the software you describe. I don't know the ins and outs of this kind of stuff. Or the legality.

My main concern is new users and the difficulties they are facing. That is why I posted this.


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Babette
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Post by Babette » Sun Aug 19, 2007 2:03 pm

CYBER GEEKS - set up a PayPal account and request donations to the project of writing FreeWare to read our SmartCards.

I'm supporting a friend of mine who runs a website of info for reenactors. She has a little PayPal link, and once a year or so I give her a donation to defray her expenses. I'd be happy to do the same for you code monkeys.

I too don't much care about all the charts. Just some basic data is fine with me.

Great post Snoredog!!!!!!!!!

Oh, and Rose, that was me complaining about old people sex. Doug just chimed in. Sorry.. I'm tired of being old and having to have old people sex myself. Fat sex was bad enough, I suffered that humiliation... now old sex? Ewww... I think a book and a beer sounds better.

Many thanks!!!!!!!!!!!!!!!!!!!!!!!!!!
Barbara

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I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. :)

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Post by Perchancetodream » Sun Aug 19, 2007 3:27 pm

I think I'll tiptoe carefully around the whole old people sex thing and just thank Snoredog for all of the background on the software issue.

Being a newbie to all of this I was getting quite confused by the different policies that the major mfgs seem to have about software and what could or could not be said about them. It would be nice to have Snoredog's post (or a version of it) included in the collective wisdom section of this forum as there is nothing now that clarifies the issue so well.

Thanks,
Susan


mindy
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Software

Post by mindy » Sun Aug 19, 2007 5:48 pm

Thanks from this newbie for the background on the software issues. One possibility I've thought of is a simple spreadsheet with formulas to take the 7-day and 30-day data and decompose it into daily data. However, it wouldn't be quite as useful as the card data and it would be a bit of a pain to enter the data every day.

I do definitely vote for a $99 read-only version of the software so I can easily see how I'm doing. It makes logical sense since it would likely help compliance, let us know if we've got too many leaks and would enable us to notify the sleep doc if there may be a need for pressure change.

Most docs I know are generally appreciative of my keeping track of my own data (I have a number of medical conditions). I created a one-page "map" of my medical conditions, medications, medical history, etc using "MindManager" software and this has been much appreciated by at least some of my docs.

I'm not as familiar with the DME world as with the rest of the medical establishment. Like any profession, one can find both good and bad.

I've been on cpap for 10 days and have luckily been able to sleep since the beginning. My brain is much more alert and I'm hoping the fatigue will eventually improve.

I'm going to ask my sleep doc about the software issue and get her take on it.

Mindy
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JZ
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Post by JZ » Sun Aug 19, 2007 8:08 pm

$99 read-only software? Yes, sign me up. I would buy it in a heartbeat.

Thanks Jen and Snoredog for this interesting thread.

Janna

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Re: Software

Post by j.a.taylor » Sun Aug 19, 2007 8:47 pm

mindy wrote:I created a one-page "map" of my medical conditions, medications, medical history, etc using "MindManager" software and this has been much appreciated by at least some of my docs.
Mindy,

Wow, a fellow MindManager user! Isn't it a great piece of software!

Now if we only had an add-in that could input CPAP data.

John A. Taylor

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ozij
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Re: Software

Post by ozij » Sun Aug 19, 2007 10:17 pm

j.a.taylor wrote:
mindy wrote:I created a one-page "map" of my medical conditions, medications, medical history, etc using "MindManager" software and this has been much appreciated by at least some of my docs.
Mindy,

Wow, a fellow MindManager user! Isn't it a great piece of software!

Now if we only had an add-in that could input CPAP data.
Two fellow MindManager users!!! One of the best pieces of software I've ever run into!

O.


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Babette
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Post by Babette » Sun Aug 19, 2007 10:25 pm

So? Clue the rest of us in. What's MindManager and where do you get it?

Cheers,
B.

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap.
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. :)

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ozij
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Post by ozij » Sun Aug 19, 2007 11:20 pm


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And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023