Software is not for patients.

So, I just got a ResMed s9 after having an old school ResMed without data collection for six years. I'm loving it.

When I check the info button, some nights I'll have a really high AHI and completely informally, those are the days I'm most tired.

Anyway, the DME company called me up to get the 30 day report and I gave them the card, etc, etc. I had to ask, but they were nice enough to send me the report. 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.

But so here's the deal. I get "Software is not for patients" because "I could set the pressure differently". I'm reasonably certain I could find the magic button sequence that let them set the pressure in about 8.321 seconds of googling, but we'll ignore that and just assuming I'm not lying to the machine about what altitude I'm at.

I'm an engineer and I have all the data files from the card.. but I'm also a lazy, reasonably well paid engineer with better things to do. If I can pay them money for the software, I'll do it. From what I can google, it's like $200. Even though I'd have to run it on Windows. 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? They've already rejected the idea of a Rx, so I'm not sure the doc can help at all.

viewtopic/t58422/viewtopic.php?f=1&t=58 ... 72#p546472

See link under Uncle Bob's signature.

Uncle_Bob has removed the links from his signature....just PM him, and he will send you the links to download the software for free as well as the clinician's manual for your machine. Learning to tweak your settings and manage your own therapy is important for you (us) to be informed, pro-active, and empowered cpapers!

Good luck and keep us posted on your progress.

I got the hook up...

for anyone googling, like I was a couple weeks ago, there is a solution and it's easy and free. Just ask.

I will refrain from pontificating on how angry I am at how I must be protected from using my High School AP chem to do some math.

ohammersmith wrote:I will refrain ....

You are no fun.

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.

The DME said that when I asked about getting the software so I could do exactly that.

Here's the thing (see I'm pontificating) there's a difference between "taking control of your therapy" and "expecting people to do their goddamn jobs".

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.

But! That said, I reserve the right to be arrogant and derisive and downright rude to the buffoons who think they're "experts" because they went to community college but won't even do their job.. which, as far as I (and the $1k over retail I paid them for the machine) am concerned ought to include raising a flag when they see a report that shows a leak like this. If it's not their responsibility whose is it? If it's my Dr's that sucks, I won't see her until February. That's right, I'm pissed I have to do myself, even though I'm paying someone to do it for me.

Yes, yes, yes, yes. I know it's MY responsibility. But they sure as hell act like it's theirs and that they have the situation under control. They actually make the whole situation worse because the only thing worse than no one paying attention is someone who isn't paying attention but says they are. Hell, I got my first CPAP and somehow they managed not to tell me the mask ought to be replaced occasionally. Fer cryin' out loud, they run a *business* and all they had to do was mail me crap and bill my insurance. WTF. Any other *business* would get sued by their shareholders for being that incompetent.

So the actual answers to your questions... "they" wouldn't give me the reports so I don't honestly know my non-treated AHI, but purely based on 6 year old memory of what the guy told me after the first study I had was 122. With what I have, leaks and all, I'm < 15 consistently. But I feel a helluva lot better in the morning when it's < 3 and I'd really like to get to the bottom of what makes it 12 vs. 2. This is actually the level of optimization I don't expect from my Dr... Dr's think their job is to get you back to "normal" and not to get you up to "optimal".

roster wrote:

ohammersmith wrote:I will refrain ....

You are no fun.

Happy now?

Just don't get me started on how the old DME managed to get paid twice for the same machine because, apparently, "the insurance company requires you rent it first"... which they did without telling me. I got left holding the bag when my company switched insurance providers in the middle of said rental and all three companies said, "not it" and ran away.

Oh and the insurance company requires no such thing.

I'm feeling better now.

Glad you got the software now.... You are entitled, legally, to your medical records. You should request a copy of your sleep study results....not just a summary, but the 5-8 pages of reports including the doctor's dictated notes on your results. You are also entitled to have a copy of your original Rx for your machine and mask. This is important should you need be traveling and need a replacement part or mask. It is also just good to have it as part of your own medical file. The DME isn't the one to ask for these things.....call the doctor's office and ask for copies. Either arrange to pick them up or have them mailed to you. You may find they will charge you for the copies, but not all do.... my sleep doc's office gave me copies of everything I asked for.

Being assertive, knowledgable, and pro-active makes you an empowered patient!

ohammersmith wrote:The DME said ... about getting the software ... difference between "taking control of your therapy" and "expecting people to do their goddamn jobs"... "experts" because they went to community college but won't even do their job... "they" wouldn't give me the reports so I don't honestly know my non-treated AHI, but purely based on 6 year old memory of what the guy told me after the first study I had was 122. With what I have, leaks and all, I'm < 15 consistently. But I feel a helluva lot better in the morning when it's < 3 and I'd really like to get to the bottom of what makes it 12 vs. 2. This is actually the level of optimization I don't expect from my Dr... Dr's think their job is to get you back to "normal" and not to get you up to "optimal".

OK, so we see you when the "pressure relief valve" is removed.
My case is in a similar boat to yours, maybe just a few steps ahead. To date I see a number of phenomena in my detail data that the summary report ignores.
Trying to see it from a team cooperation point of view, I haven't ask for CONTROL, just to be a PARTNER in the project. And I put it in writing before the start of sleep studies. And I haven't yet paid the bill. But the game is still being played with me: trying to net a desperate patient, me him / her dependent on a single provider, then restrict service to quick physician's consultations (billable events), with all else being restricted to phone messages to an unhelpful PA or busy DME provider... or delay response time until the patient accepts the terms.
You could make contingency plans to switch to a more cooperative team. Then ask for a business meeting with the physician, to review the modus operandi. But first you have to be able to prove that you have enough knowledge, interest, and time to function as a partner in a home CPAP study. I believe the physician is the key, to whom the DME provider is responsible for the therapy decisions. And all team members need to agree that often home CPAP calibration -- if properly integrated with the PSG studies already performed -- is the key, long term solution to such chronic treatment of OSA.
Conversely, I've seen several forum members, irritated by their condition, strike out at their clinical team, without knowing what to do about their treatment. In which case it could be dangerous for the doctor to pass the controls to the patient.

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.

AMUW wrote: Conversely, I've seen several forum members, irritated by their condition, strike out at their clinical team, without knowing what to do about their treatment. In which case it could be dangerous for the doctor to pass the controls to the patient.

Compared to strictly following the instructions of the medical profession, if the patient uses the patient efficacy software, has some basic knowledge about his condition, and acts in his own best interest, there is little to no damage that he will do to himself.

And let's be honest, the ones who are suffering much damage are the ones whose therapy is poor because they don't use the patient efficacy software and haven't sought some basic knowledge about their condition.

I guess the unsurance (misspelling intended) companies are assuming the noncompliant patient will just quietly and cheaply die--
rather than have a stroke, heart attack, or who knows what else.
Well, they DO have access to the statistics--maybe more do die quickly.

You can buy software from CPAP.com!