DME was PISSED.

[DreamOn]

To be perfectly honest, if the machine is not fully data downloadable, its as useless for me as it is the client.

If the machine is not fully data downloadable and is therefore useless to both you and the "client", by your own admission, then it shouldn't be SOLD! Period.

I passed the anger stage long ago.

My anger is fueling activism! This system really has to change.

~ DreamOn

[Davidwnc]

...HEY...consider this....it's my freak'n life.....

damn your profit margin.

I passed the anger stage long ago.

It’s your freak’n life, but without profit your freak’n CPAP would not have been manufactured. Nor would the vast majority of CPAPs. I cannot think of a major CPAP manufacturer that is not a for profit business. Sometimes profits have to be tolerated to help keep you alive and healthy (and in the CPAP equipment of your choice...)

[Cavallo]

Hope that helps explain why the machine manufacturer provides both the average and the 90th percentile number.

It does. You've very successfully put in plain english some concepts that were sort of kicking around in the back of my brain, but hadn't coalesced. Thanks.

Now, if I'm basing a setting decision on this range of numbers, it would seem prudent to fix a minimum pressure just shy of the median value (particularly since it agrees so well with my lab value,) and a maximum just above the 90th percentile, right? Or was the DME correct in saying that it would be just fine to run things with a fixed pressure at the median?

[DreamOn]

It’s your freak’n life, but without profit your freak’n CPAP would not have been manufactured. Nor would the vast majority of CPAPs. I cannot think of a major CPAP manufacturer that is not a for profit business. Sometimes profits have to be tolerated to help keep you alive and healthy (and in the CPAP equipment of your choice...)

"....and in the CPAP equipment of your choice." THAT is the problem. Most of us are not offered "a choice". And some of us are told lies. That just isn't right.

My message to the DMEs:

There are plenty of CPAP users who don't care about "the numbers". And many more that don't even realize that it's possible to track progress. The DMEs are making more money off those folks. Be we DO care about our own therapy, our lives, and our health and we want machines that will enable us to succeed at therapy. It's not like you're taking a loss.

Please just give us what we need to do well without so much resistance. It's difficult enough for us dealing with the effects of sleep deprivation. Have some compassion, as a human being. Life is not all about money.

~ DreamOn
(who had an extra-good night of sleep--zero apneas, AHI of 1.0, and no leaks!--and is especially feisty today!)

[JohnBFisher]

... Now, if I'm basing a setting decision on this range of numbers, it would seem prudent to fix a minimum pressure just shy of the median value (particularly since it agrees so well with my lab value,) and a maximum just above the 90th percentile, right? Or was the DME correct in saying that it would be just fine to run things with a fixed pressure at the median?

Well, first of all, all I can offer is my opinion based on my experience.

A fixed pressure works fine if everthing remains the same with you each and every night. It might work "ok" on other nights and be almost close enough.

However, the last time I checked a single pressure does not always work for me. If I am on my side, the pressure I need is different than if I am on my back. If I had a drink (rare, but occassionally I do have one) before bed, then I need a different (higher) pressure than when I've not had anything to drink. If I have more stress during the day, I tend to obstruct more (I also have more problems with central apneas, but you probably don't have that). Oh, and what happens if you gain or lose weight. That can and does impact your pressure requirement.

So - again this is just my own opinion based on the 18 year of my own personal experience - a tight range would seem to offer the best chance to adapt to the changes in your need for differing pressures. So, if you start at slightly (2 to 3cm H2O) below the mean, and set the maximum value slightly above the 90th percentile (again 2 to 3cm H2O), you will cover the full range of pressure you will most likely require. A fixed pressure would miss the mark most of the time.

By the way, it's a statistical nit, but I wanted to help clarify the meaning of a few words. The mean is the average. The median is just the center number in a sorted list. Those can be quite different.

[Slinky]

... The amount of profit gained from your machine is minimized somewhat by the lack of profit for your mask and tubing. ...

Say WHAT????? LACK of profit? On mask and tubing??? My red royal arse!

Sorry, rjjayrt, I prefer to be civil ... but ... that statement was just too ... too ... just plain horsepuckies!!!

May 2008
Mask - Medicare paid: $117.64 My copay: $23.53
Headgear - Medicare paid: $39.75, My copay: $7.95

The mask? Respironics Simplicity simple nasal cushion which sells for $75-$80 online WITH HEADGEAR. I realize local DME suppliers have higher costs than online DME suppliers, much of it related to dealing w/insurances but ..... gimme a break!

[Cavallo]

By the way, it's a statistical nit, but I wanted to help clarify the meaning of a few words. The mean is the average. The median is just the center number in a sorted list. Those can be quite different.

Not a nit at all. In fact, I do vaguely recall that. My higher education was a bit tempestuous, but I was a math major for awhile. I finished two years of calculus in a year. Ultimately, it was statistics that made me flee screaming. It just made me glaze over. I switched majors soon after I realized this.

Anyway, thanks for the theoretical validation. Now to see how this all plays out in practice...

[JohnBFisher]

... My higher education was a bit tempestuous, but I was a math major for awhile. I finished two years of calculus in a year. Ultimately, it was statistics that made me flee screaming. It just made me glaze over. I switched majors soon after I realized this.

LOL! And for me it was the calculus class that did me in. Also depends on how you learn and how the professor / instructor provides the knowledge. Things make a lot of sense to me if the instructor takes the time to explain WHY we use certain formulas. I aced linear programming (solving an equations when multiple variables are in play for an optimal solution). But the calculus professor just said "Here are the formulas. Use them!". Made no sense to me.

Anyway, I think you will find that knowing the mean and 90th percentile will help you better understand YOUR requirements as things change. You might track changing numbers based on the stress of your day. You might track it to if you had some sort of central nervous system depressant (cold medicine, alcohol, etc.). And using those two numbers (for this type of problem) is MUCH easier than using standard deviation or other similar tools.

Of course, the most important thing to remember is that just because the numbers look good does not mean that you feel well. You need to try to figure out when those correlate.

Enjoy. And remember that knowledge always is power. And since it is your health, knowing how the therapy impacts you is very important. If some DR or RT gives you grief, ask how it differs from a diabetic monitoring their blood glucose levels? The fact is that it does not. It is a chronic condition that needs to be managed to avoid many of the same problems.

[rjjayrt]

As I believe I said in my post, I agree with you.

[peppi]

I still stand behind my original thought on DMEs.
Dont need them, never did, never will.
I have a $600.00 deductable bought new APAP with 4i humdifier, two new masks exchanged two sets of replacement pillows from people I met here (will have three) all for under $400.00.
Set the machine up, sleeping like a baby thanks to this forum.
DME's ? ? --- pooey.

Best,
Phil

[Cavallo]

As I believe I said in my post, I agree with you.

I know. Mostly, at least. I was just making my position as clear as possible.

At the root of it, I think everyone can agree that it's a shame the system is set up in such a way that patients should be put in the position of feeling as if they're at odds with people who are being paid to help them.

[bearcatx16]

By the way, it's a statistical nit, but I wanted to help clarify the meaning of a few words. The mean is the average. The median is just the center number in a sorted list. Those can be quite different.

Thanks for that clarification JBF as it is confusing sometimes and for the motoring public this Holiday I want to clarify that the area between the opposite lanes of the interstate is the "median" not the "medium".

bcx16

[JohnBFisher]

... and for the motoring public this Holiday I want to clarify that the area between the opposite lanes of the interstate is the "median" not the "medium".

I assume a "medium" is who you will need to consult if I confuse the two?

[DoriC]

John B, I'm so glad you threw in that By The Way comment as if it wasn't important! Now I know the difference between Mean vs Median! Thank you.

[karessamom]

... The amount of profit gained from your machine is minimized somewhat by the lack of profit for your mask and tubing. ...

Say WHAT????? LACK of profit? On mask and tubing??? My red royal arse!

Sorry, rjjayrt, I prefer to be civil ... but ... that statement was just too ... too ... just plain horsepuckies!!!

May 2008
Mask - Medicare paid: $117.64 My copay: $23.53
Headgear - Medicare paid: $39.75, My copay: $7.95

The mask? Respironics Simplicity simple nasal cushion which sells for $75-$80 online WITH HEADGEAR. I realize local DME suppliers have higher costs than online DME suppliers, much of it related to dealing w/insurances but ..... gimme a break!

You're lucky, my DME charges me $270 for ANY mask and headgear that goes out the door. Fortunately for insurance i'm not having to pay that much, although i will be come Jan until i meet my $750 ded.