CPAP Basics - 1

[quietmorning]

When would you get into the data? Are there instances where you are pretty sure keeping an eye on your data and working out issues asap would be not only appropriate but necessary?

The one I can think of off the bat is pre and post surgery.

[DeadlySleep]

There are those out there who get the same results or better with a brick and an annual Dr visit.

Anyone can key that statement into a forum post, but how do you know their results would not have been better with software and self-monitoring?

Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked.

Your doctor can tell you any percentage he wants to tell you. So can I. No need to be shocked.

[Wulfman...]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

I agree 100%...I went my first 4+ years with a brick and no data. I was doing fine. Now I have a data capable machine. I HOPE I don't start following my data daily.

I'm sorry.......but these posts reminded me of this quote:

"There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know."

Donald Rumsfeld



Den

.

[pikov22]

Hello All! Hope you doing well!

In this post my goal will be to concisely assemble everyone's collective knowledge on the basics of CPAP usage. I'll post a question along with what I believe to be the answer, and invite all comments, feedback, or replys. Next Sunday, I'll come back and post another calling it CPAP Basics - 2, etc. etc. I hope all will find this an easy way to get a good start if they are new, or for the veteran users, maybe they will find something they have not yet discovered. This blog is without a doubt a wealth of information and I'm very interested in how you'll answer these questions.

What should be the number one concern for a new CPAP patient?

My answer: By far and away, initial mask fit and cleanliness of both the cushion/pillows and skin.

Isn't initial fit determined at the titration study? (Mine - and mask selection - was.)

I'd say the #1 concern is to make sure that your sleep doc is an experienced sleep-certified pro with an open mind who keeps up-to-date.

[akcpapguy]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

I can tell you what the rate is for my company judging by the patients who have asked or even shown interest in tracking their own therapy. In the last 5 years I have done approx. 2100 cpap/bipap setups, only 3 patients have ever asked or shown and interest in tracking their own data....that's .001%

Now granted i have no idea what people do in their own home and some of them may have decided to take an interested in their therapy after they left my office, the percentage is still extremely low.

[LinkC]

how do you know their results would not have been better with software and self-monitoring?

I don't. But that's not what I said, of course.

Your doctor can tell you any percentage he wants to tell you. So can I. No need to be shocked.[/quote]

So, you assume my doctor would lie? To what end? And why do you assume she's a "he"?

(Those are all rhetorical questions, btw. I really don't care what you think.)

[Todzo]

When would you get into the data?

In order to use the data (I do mean the real flow data here) you need to be looking at it several times a week. That is how you relate lifestyle to PAP effectiveness. That is how you identify trends. That is how you truly connect with “what the numbers mean”.

Are there instances where you are pretty sure keeping an eye on your data and working out issues asap would be not only appropriate but necessary?

The one I can think of off the bat is pre and post surgery.

My recovery from trauma surgery would have been much better and faster if this had occurred. You nailed it again!!!

Others have pointed out, however, that using data as things are currently is very technically challenging. Well the Open Source community has produced by far the best software answer so far, and I do indeed intend to help it produce good PAP software that will work for the technically challenged. At the same time I will do what I can to move the current very fallen American Medical Empire to move toward making PAP work for the majority rather than a few who happen to make it work which is the current situation.

“xPAP College”!! Honestly, are there those out there who can put together some good educational materials?? The current very fallen American Medical Empire is so blinded by looking through their “Golden Glasses” that they will not see that we need this.

I was amazed watching how Firefox jarred Internet Explorer back to life. A case where the Open Source community helped move the Microsoft software monopoly to be effective. Perhaps what we need here are some non-profit organizations to help move the current very fallen American Medical Empire to be effective.

I hope we find our way. Obstructive Sleep Apnea kills very slowly. Along the way the harm to relationships, professional and personal, is profound. We need to move to stop this.

I hope we find our way!

Todzo

[LinkC]

That's close enough, akc!

She's in a practice of 2 docs and 3 PAs. Just over 800 OSA patients, and I'm the ONLY one who brings charts and asks questions about the data.

I would have guessed higher. Maybe I hang with you data freaks too much...

[Janknitz]

I can tell you what the rate is for my company judging by the patients who have asked or even shown interest in tracking their own therapy. In the last 5 years I have done approx. 2100 cpap/bipap setups, only 3 patients have ever asked or shown and interest in tracking their own data....that's .001%

I'm not surprised by this, because we here are a self-selected group of CPAP geeks, no question about it (and if only such a small percentage ask, why do DME's get their knickers in a knot about providing so few data EFFICACY capable machines???).

BUT, what worries me is that with a machine without data, how does your DOCTOR or DME know what's going on other than hours of use? I would expect them to know. Otherwise we see things like we have here, where a person who has had a CPAP for YEARS finally comes to us for help because he or she never felt any better despite being 100% compliant. When we talk a person like that through getting data, often what we find out is that their therapy wasn't just suboptimal, it was not therapeutic to begin with either because of terrible leaking or just poor AHI control for whatever reason. But each doctor visit ended with instructions to "just keep using the machine". SOMEONE should have been checking that data periodically when there were complaints of lack of EFFICACY to see if they could tell what's going on--whether that someone was the CPAP user, the DME, or the doctor. Without data, nobody knows, and a sleep lab test may still not indicate problems with that person's machine and mask in the home setting, where an EFFICACY data capable machine can be a valuable tool to the professionals if not to the user himself.

I'll heartily agree with a previous poster that the most important first step is to gain at least a simple understanding of one's own sleep apnea--how it impacts health and why therapy is important. Too many people don't feel better, don't understand what the machine is supposed to do, don't understand why it's dangerous to go untreated, and let their machines languish unused on the nightstand or the closet when problems are encountered.

And the second step is understanding the process of getting a machine.

[chunkyfrog]

I thought I hit paydirt when I found the Apnea for idiots (or was it dummies?) book at B&N.
Suffice it to say, if their book was all the information you had, --you'd be still an idiot/dummy.
I put the useless tome back on the shelf, without carrying it to the checkout.

[Todzo]

If it ain't broke, don't fix it.

Certainly the fact that most cannot use PAP long term screams “THE CURRENT WAY OF ADMINISTERING xPAP IS VERY BROKEN”!!!!!!!

OTOH, if it is broke, there ain't nothing wrong with trying to fix it yourself, if you know what you are doing. If I have a migraine, I am not going to wait for my annual appointment for the doc to tell me to take a pill. While SBD is a little more complex situation, the concept still applies.

Indeed, I do believe we should do that individually and as a group..

Todzo

[kaiasgram]

In the last 5 years I have done approx. 2100 cpap/bipap setups, only 3 patients have ever asked or shown and interest in tracking their own data....that's .001% Now granted i have no idea what people do in their own home and some of them may have decided to take an interested in their therapy after they left my office, the percentage is still extremely low.

Most patients at the point of setup have no idea that the option even exists to learn about and monitor their therapy, so no surprise that only 3 patients have asked. I'd like to see this information (about the availability of software as a therapy tracking tool) be an integral part of early patient education. Not all will need it or choose to use it, but all apnea patients should at least be told that these tools exist should they choose to make use of them.

Another poster suggested that the importance of patient data self-monitoring is perhaps overrated. I think that's true only for those fortunate patients who experience improvement very early on. For those who struggle with the adjustment and/or who do not experience improvement in how they feel after starting therapy, the ability to examine their data more closely becomes very important and can mean the difference between sticking with it or giving up.

[Loreena]

Most patients at the point of setup have no idea that the option even exists to learn about and monitor their therapy, so no surprise that only 3 patients have asked.

+1

[Wulfman...]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

I can tell you what the rate is for my company judging by the patients who have asked or even shown interest in tracking their own therapy. In the last 5 years I have done approx. 2100 cpap/bipap setups, only 3 patients have ever asked or shown and interest in tracking their own data....that's .001%

Now granted i have no idea what people do in their own home and some of them may have decided to take an interested in their therapy after they left my office, the percentage is still extremely low.

I've sort of been waiting to see if anyone would bring up the comparison between this and other therapies/treatment monitoring.......like Diabetes, taking Coumadin/Warfarin and other things that need to be monitored. I can't imagine ANY doctor turning someone loose with insulin or Coumadin without any way of monitoring it. But, we've had people (DMEs) threateningly post on this forum that it's "illegal" to change our own machine settings and how many users have been told by DMEs that we couldn't possibly understand the data from these machines, etc., etc.?
Yet, it would appear that the "medical establishment" has no concerns that the compliance percentage of THIS therapy is so pathetically low. The manufacturers obviously aren't eliminating the "bricks" (non-data-capable machines) or pressuring the DMEs to train the users to monitor their therapy with data-capable machines and software. In my opinion, giving a CPAP user a non-data-capable machine is comparable to giving a person with diabetes a glucose meter that doesn't display blood sugar levels. ARE YOU KIDDING ME?!?!?!?!?!?! Even with diabetes, there are "Certified Diabetes Educators" to help people learn about and monitor their therapy.


Den

.

[melindy]

I am very new to cpap- I think about a month or so, maybe 6 weeks. I'd say for me education has been very important, all of which I've gotten from here - either from threads or links to information. Not surprisingly my RT and sleep doc have been extremely unhelpful and I haven't had much information from them. Because of this site I know that the machine and the hose are both very important and the mask is of utmost important. Honestly, I don't know if I would still be using the machine if it weren't for this site. I'm lucky in that I can sleep through the night with a mask on, but I've read so many threads on here that helped me look at my data and figure things out. Mask comfort is what I'm finding to be the most key for me and compliance.