What would forum look like if all had data capable machines?

[elena88]

Right now, little newbies come here, (I was one of them) wondering what the heck is going on with their therapy..

Most of the time you all had to "guess" why we were having struggles..

Imagine if you will, EVERYONE has data capable machines, EVERYONE knows how to load the graphs, stats, and charts..

They come in with a question, load their graphs, and you see what.. HUGE LEAK LINE? a bunch of events? someome not sleeping?

You see it all!

Imagine how easy it would be to help people help them selves!


EDIT, THANKS DREAMON, SEE HER POST BELOW, THE LITTLE FACE ON THE S NINE IS JUST FOR A MASK LEAK TEST, OOPS! DOESNT COVER MOUTH LEAKS!

EDIT NUMBER TWO, OH THE LITTLE MASK DOES COVER NIGHT TIME LEAKS TOO! THANKS YOU GUYS!
I have been on my apap for over five months.. everytime I checked my data ON the machine, it gave me a happy face for mask leaks..
little did I know I was leaking like a tea strainer! What I didnt know was WHY.. so that took some sluething....
MOUTH LEAKS... (taping experiment)

But without the data, I would never have known to look for leaks, from tubing, the nose pillows, my mouth, etc..

What do you think this forum will look like when everyone can post a graph lickity split when they have a question?[/b]

[xyz]

Good point. Although everyone isn't as perceptive as you are.

There would be lots of "what does this data mean" questions, but the advice we all give would be better since we wouldn't have to guess as much.

DMEs that cheat new patients out of data capable machines in order to increase their profits ought to go to jail.

Sleep doctors who don't prescribe data capable machines are even worse, since they have the primary responsibility for the patient's health.

When I started out, heated humidifiers were extremely difficult to justify. Now it's like they're standard. Maybe this will happen with data.

[elena88]

I think in the future selling a cpap without data would be like buying a computer that doesnt have an email function..

and I mean the GOOD data, not just comliance data b.s.


the forum would be busting with colorful graphs!


Leaks of mountain peaks!

events on the horizon!

reading other's minute ventilations with your cup of coffee!

[billbolton]

What do you think this forum will look like when everyone can post a graph lickity split when they have a question?

It will probably be even more agrumentative than it is now about what the graphs mean!

Cheers,

Bill

[Janknitz]

Dream on, Elena!

Personally, I think manufacturers and DME's should not be allowed to sell machines that are not data capable! With the poor follow-up many people get, many of those that are willing to sleep hooked up to the machine may be getting little or no therapy and not even know it if they don't 1) have data and b) know how to use it.

Data capable machines are only half the battle. Sleep doctors, RT's, Sleep techs, and DME providers all need to be educated about the machines themselves (too many are not) and to educate their patients on how to use them to best advantage. Sadly in the American system, that would reduce everybody's profits because it all takes time and time is money.

We see sleep doctors who don't want their patients to have data capable or auto machines because then they can't charge the patients for their "expertise" and expensive re-testing--or, conversely, well-informed patients who ask well-informed questions take up too much of their time. Likewise for RT's.

DME's profits are reduced when they cannot provide the cheapest possible machines. And they certainly don't want to pay for the RT's time to teach patients how to access and understand data on their machines.

Here’s what I think—more and more people are being diagnosed with SA around this country (and world) every day. We are getting to be a BIG group of people (literally, and possibly figuratively ). We should organize and use this clout.

WE need to rise up and lead the way—lobby Medicare and insurance companies to INSIST on data capable machines and real patient education and follow-up. We need to shift the focus from compliance to efficacy. IMHO, if the treatment is effective, the compliance will increase because people will appreciate and use their machines instead of sticking them in the closet. That’s one thing I think my Kaiser HMO really does right—Kaiser recognizes that if the patients use the machines, risks from SA associated illnesses decrease, and their costs go down, not up. Kaiser provides data capable machines and patient education to support xPAP use.

We need to lobby the machine and mask manufacturers to talk to us, the end users, and give us more consideration in their designs. Unfortunately, because we do not buy directly from the manufacturers, they don’t see us as their clientele, and we are “just” the patients, not the consumers in their minds.

[DoriC]

Right now, little newbies come here, (I was one of them) wondering what the heck is going on with their therapy..

EVERYONE knows how to load the graphs, stats, and charts..

Um, Excuse me, but did you mean ALMOST EVERYONE! ?

[kwikwater]

What do you think this forum will look like when everyone can post a graph lickity split when they have a question?

It will probably be even more agrumentative than it is now about what the graphs mean!

Cheers,

Bill

Like a Respironics "Vibratory snore" aka dragging the hose over the edge of the nightstand, evidently. Never have figured out what those little blips are supposed to mean. Maybe I should find a gal to sleep with me - you know - for scientific data gathering, LOL!! I'll have to try that line!!!

Kelvin

[packitin]

It would be as exciting as reading calculator manuals.
All we'd see is graphs and technical stuff.
I like it this way better.

[RinR]

I am going in to my sleep study tonight and I hope I can get a data machine. I am not confident but hopeful. At least I am going in armed with knowledge from this forum. What a wealth of information you have here. I am requesting all the reports in writing, etc.
Thank you one and all. Now if only I can sleep.

[chunkyfrog]

One of the big shots in the local the support group sounds like a luddite; he doesn't believe that patients should have access to data--and he's not even a provider; just a retired lawyer. My provider set my machine up with only hours showing, but went in the other room to hide the big two-button secret I knew a few days later when I got my greasy hands on the clinician's manual--thank you, Uncle Bob!
Being a diabetic, I cannot for the life of me understand why they have to be so possessive of the info we need to STAY ALIVE. Something is just not right!

[Wulfman]

What do you think this forum will look like when everyone can post a graph lickity split when they have a question?

It will probably be even more argumentative than it is now about what the graphs mean!

Cheers,

Bill

Ya think???


Den

[liv2kite]

Dream on, Elena!

Personally, I think manufacturers and DME's should not be allowed to sell machines that are not data capable! With the poor follow-up many people get, many of those that are willing to sleep hooked up to the machine may be getting little or no therapy and not even know it if they don't 1) have data and b) know how to use it.

Data capable machines are only half the battle. Sleep doctors, RT's, Sleep techs, and DME providers all need to be educated about the machines themselves (too many are not) and to educate their patients on how to use them to best advantage. Sadly in the American system, that would reduce everybody's profits because it all takes time and time is money.

We see sleep doctors who don't want their patients to have data capable or auto machines because then they can't charge the patients for their "expertise" and expensive re-testing--or, conversely, well-informed patients who ask well-informed questions take up too much of their time. Likewise for RT's.

DME's profits are reduced when they cannot provide the cheapest possible machines. And they certainly don't want to pay for the RT's time to teach patients how to access and understand data on their machines.

Here’s what I think—more and more people are being diagnosed with SA around this country (and world) every day. We are getting to be a BIG group of people (literally, and possibly figuratively ). We should organize and use this clout.

WE need to rise up and lead the way—lobby Medicare and insurance companies to INSIST on data capable machines and real patient education and follow-up. We need to shift the focus from compliance to efficacy. IMHO, if the treatment is effective, the compliance will increase because people will appreciate and use their machines instead of sticking them in the closet. That’s one thing I think my Kaiser HMO really does right—Kaiser recognizes that if the patients use the machines, risks from SA associated illnesses decrease, and their costs go down, not up. Kaiser provides data capable machines and patient education to support xPAP use.

We need to lobby the machine and mask manufacturers to talk to us, the end users, and give us more consideration in their designs. Unfortunately, because we do not buy directly from the manufacturers, they don’t see us as their clientele, and we are “just” the patients, not the consumers in their minds.

My sleep doc (when he explained my sleep study and my prescription) billed $600 ! No wonder he was fine with me babbling on and on and would like me to come back often. He DID however agree to prescribe me the brand I chose (S9 despite his preference for Respironics) and a fully data-capable APAP machine (despite prescribing 7 cm CPAP mode). I have the software and am running APAP 7-9 cm (with median pressure 7.5cm, 95% pressure 8.9 and AHI 0.2. I think I will boost my max pressure to 10).

[deerslayer]

if not for our family on here i would not have been able to go into machine settings and tweak min & max settings tonight or for that matter format the card . haven't touched settings in over a year, however it just came natural. i may change them back again in a few nights. my choice , no harm , no expense , no waiting room . ... glad i don't have to depend on the VA for help with cpap *

[DreamOn]

In regard to the topic, all I have to say is, "I am SO thankful for the data!" I don't know where my therapy would be if I couldn't track my results data. And I don't know how I would be doing if I hadn't found this wonderful forum. The sleep doctor certainly didn't help.


[Edit: deleted some information that was incorrect.]

[liv2kite]

In regard to the topic, all I have to say is, "I am SO thankful for the data!" I don't know where my therapy would be if I couldn't track my results data. And I don't know how I would be doing if I hadn't found this wonderful forum. The sleep doctor certainly didn't help.

I have been on my apap for over five months.. everytime I checked my data ON the machine, it gave me a happy face for mask leaks..
little did I know I was leaking like a tea strainer! What I didnt know was WHY.. so that took some sluething....
MOUTH LEAKS... (taping experiment)

Sorry that this is a little off your thread topic, Elena, but I feel compelled to clarify what the happy/sad icon means on the S9 machines.

It is not judging the nightly Leak Rate. It's reporting the results of the S9's "Mask Fit" feature, which can be accessed by pressing and holding the round dial for at least three seconds. This is used to test your mask fit for up to three minutes before starting the therapy session. If mask fit is good, you will see the happy face; if fit needs adjustment, you will see the sad face. If you don't use the "Mask Fit" feature, you'll always see the happy face. Again, it has nothing to do with the machine's reported Leak Rate.

I just wanted to clear that up because the meaning of that icon seems to be misunderstood a lot and causes some confusion.

I thought that happy face was for both mask fit and then in morning for overall leak rate. I will have to go back and confirm what you are saying. Seems pretty ridiculous to show 3 min mask fit data on the Info window that speaks to last nights xPAP data.