UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

[ChicagoGranny]

Todzo
The absolute need, and I very much believe this should be required by law, for constant monitoring ALL of the time the PAP therapy is used. After doing my own monitoring for a couple of years I believe that anything less is simply medically irresponsible.

For yourself, OK.

But you are getting carried away about making it universal.

My husband likes his brick CPAP. A couple of times per year I will get him to sleep with one of our two data-capables and his report always looks good (AHI<2.0).

I believe many people do consistently well over a long period of time with a single CPAP pressure.

I don't blame you for treating yourself with Auto and plenty of data every day. But it is not necessary for everyone.

[Lizistired]

Wow, 8 pages. Any way I can get this thread in MP3 format. It looks really interesting but I'll never catch up.

[robysue]

Todzo
The absolute need, and I very much believe this should be required by law, for constant monitoring ALL of the time the PAP therapy is used. After doing my own monitoring for a couple of years I believe that anything less is simply medically irresponsible.

For yourself, OK.

But you are getting carried away about making it universal.

My husband likes his brick CPAP. A couple of times per year I will get him to sleep with one of our two data-capables and his report always looks good (AHI<2.0).

It's good your hubby is doing well and has no real need of data. And that you and he can confirm he's doing well a couple of times a year by switching machines out without any inconvenience to the two of you.

But let's suppose the situation were different:

Suppose neither you nor hubby had a full data machine---just bricks all around. And suppose that for the first six months of hubby's of therapy, hubby felt worse---as in a whole lot worse on PAP than before. And that every time hubby spoke with the doc or the DME, all they ever said was, "Be patient and keep trying harder." Or, perhaps the doc would suggest "Let's increase that pressure and hope for the best." How long should hubby keep trying--given that no-one can verify whether therapy is really effective? How long before hubby just gives up and throws the brick in a closet and concludes that "CPAP just doesn't work for me."

You see, the cost differential between providing bricks vs full efficacy data CPAPs is just not that much. And the efficacy data is essentially insurance: If the new CPAPer runs into problems, the data is there for the doc and the DME to look at, and based on what the data says, the doc and the DME can make reasonable, intelligent, and relevant suggestions that stand a chance of addressing the newbie's problems.
And if the new CPAPer adjusts well, becomes compliant, and starts to feel better in a couple of weeks and never looks at the data? It really doesn't much matter if no-one looks at the data.

It's known that about 50% of folks who start on CPAP are not using it one year later. We can safely assume that most of them were "given" bricks by their DME since most DMEs sell bricks to patients as the default machine. So it's my guess that there are lots of folks out there who could use having efficacy data available for the docs and the DMEs, (and even the patients) to help troubleshoot their adjustment problems, but who have no data beyond "number of hours used" available.

'Tis better to have the efficacy data and not need it, than it is to need the efficacy data and have nothing but compliance data available.

[ChicagoGranny]

let's suppose

Suppose

and suppose

and that

or perhaps

and if

If

We can "safely" assume

it's my guess

All hypothetical robysue and as you say some big assumptions.

I would not be without my data and I heartily endorse it to every patient I come in contact with. Spread the word.

I don't mind people demanding what they want for themselves but I put my foot down when they start dictating for everyone.

[Blindrage]

<snip>

All hypothetical robysue and as you say some big assumptions.

I would not be without my data and I heartily endorse it to every patient I come in contact with. Spread the word.

I don't mind people demanding what they want for themselves but I put my foot down when they start dictating for everyone.

And the problem is that without the data your doctor is doing that exact same thing. The are assuming the therapy is working, they are assuming that a patient will call if they are not getting better, they are assuming the patient will improve over a time period of months.

They very minimum should be a patient on a data capable xPAP for at least one month to verify the effectiveness of their treatment. And if changes are made to pressures during that month then the one month counter resets. That way the doc has at least one month of solid data showing that the treatment was effective during that entire time. After that they can be sold a brick if that is what the patient wants.

[robysue]

I would not be without my data and I heartily endorse it to every patient I come in contact with. Spread the word.

I don't mind people demanding what they want for themselves but I put my foot down when they start dictating for everyone.

So you want your data. And you don't want your doc or DME treating you based on no data except the number of hours you use the machine.

But you think it is perfectly OK for a DME to sell dataless bricks to any patient not savvy enough to demand a full data machine. And when large numbers of these naive folks who are sold bricks run into problems with therapy, it's ok for their docs amd DMEs to make blind guesses about what's going wrong since there is no data for the doc/DME to look at.

The double standard here is truly frightening.

All patients should be entitled to the same high standard of care when it comes to treating OSA. And efficacy data should always be available to any doc/DME who intends to make suggestions to PAPers in trouble on what to do to make their PAPing both more effective and more comfortable.

I say it again: 'Tis better to have the efficacy data and not need it, than it is to need the efficacy data and have nothing but compliance data available.

[robysue]

I would not be without my data and I heartily endorse it to every patient I come in contact with. Spread the word.

I don't mind people demanding what they want for themselves but I put my foot down when they start dictating for everyone.

So you want your data. And you don't want your doc or DME treating you based on no data except the number of hours you use the machine.

But you think it is perfectly OK for a DME to sell dataless bricks to any patient not savvy enough to demand a full data machine. And when large numbers of these naive folks who are sold bricks run into problems with therapy, it's ok for their docs amd DMEs to make blind guesses about what's going wrong since there is no data for the doc/DME to look at.

The double standard here is truly frightening.

All patients should be entitled to the same high standard of care when it comes to treating OSA. And efficacy data should always be available to any doc/DME who intends to make suggestions to PAPers in trouble on what to do to make their PAPing both more effective and more comfortable.

I say it again: 'Tis better to have the efficacy data and not need it, than it is to need the efficacy data and have nothing but compliance data available.

[chunkyfrog]

Robysue: You say it, girl!
Glucometers are SOP for diabetics!
Apnea just kills a little slower; and in the dark--where no one can see you struggle.

[elperroguapo]

I will agree with all those calling for a complete rundown of various equipment and software available to treat the condition. I had no idea when I left my sleep study that various options were available and that software to monitor my sleep cycle was even possible. I suspect that I was not told this so I would continuously be reliant on my doctor (whom it sometimes takes over a month to get an appointment with) to make subtle adjustments in my program. This is dangerous, irresponsible, and corrupt medical practice.

[Todzo]

Todzo
The absolute need, and I very much believe this should be required by law, for constant monitoring ALL of the time the PAP therapy is used. After doing my own monitoring for a couple of years I believe that anything less is simply medically irresponsible.

For yourself, OK.

But you are getting carried away about making it universal.

My husband likes his brick CPAP. A couple of times per year I will get him to sleep with one of our two data-capables and his report always looks good (AHI<2.0).

I believe many people do consistently well over a long period of time with a single CPAP pressure.

I don't blame you for treating yourself with Auto and plenty of data every day. But it is not necessary for everyone.

Prove it!!!!!! Peoples lives are at stake.

I know, from having my full data (minute volumes and all) that an AHI of <2 (pretty much the normal for me) can occure along with unstable breathing. With my recent weight loss I see more of this and a pressure reduction on my pure CPAP I now pursue. If I did not have the data and knew what to look for I might well have a stroke with the AHI <2.

Both thresholds are dynamic, they vary every night. You are fighting for your husbands likely distruction. Do you really want to do that!!!!

Please be reasonable, for his sake!!!

Todzo

[ChicagoGranny]

Prove it!!!!!! Peoples lives are at stake.

I know, from having my full data (minute volumes and all) that an AHI of <2 (pretty much the normal for me) can occure along with unstable breathing. With my recent weight loss I see more of this and a pressure reduction on my pure CPAP I now pursue. If I did not have the data and knew what to look for I might well have a stroke with the AHI <2.

Both thresholds are dynamic, they vary every night. You are fighting for your husbands likely distruction. Do you really want to do that!!!!

Please be reasonable, for his sake!!!

Todzo

This is an emotional reaction devoid of logic.

Can you even read what I post and think it through or are you just on a mindless crusade?

[Todzo]

Todzo
The absolute need, and I very much believe this should be required by law, for constant monitoring ALL of the time the PAP therapy is used. After doing my own monitoring for a couple of years I believe that anything less is simply medically irresponsible.

I believe many people do consistently well over a long period of time with a single CPAP pressure.

I don't blame you for treating yourself with Auto and plenty of data every day. But it is not necessary for everyone.

Prove it!!!!!! Peoples lives are at stake.

My above cry goes out not only to you but to all Medial Professionals, Equipment Manufacturers, Government Officials, and our society in general. This does affect us all. Anyone whose OSA is untreated or under treated is compromised as a productive member of society and rather becomes one who uses excessive medical and other resources.

Currently only 20% of those with OSA are known. Only 50% of those that are known and do try PAP can tolerate PAP as it is currently administered. Yet a company that uses constant PAP data feedback sees about 90% of their clients able to use it well.

Honestly, Chicago Granny, if you can find some good honest research that proves or disproves your point please do share it here! I have looked and it seems to be a case of almost willful ignorance. With the Polysomnogram, for example, I can find proof of the expected “first night effect” but no data that is taken night to night over a month or a year. I am very glad to see that at least two companies now make full Polysomnogram hardware that can be used in the home – so perhaps now we can get some long term data please? A test is useless if you do not prove that it works, and I am mindful that the Polysomnogram, being a one night deal - and that in a strange environment with emotions further cranked due to the cost, is likely compromised and I see no data that proves – long term night to night – that it is accurate. Since a good measure of the same hardware and data are used in the titration I do believe that this is part of that “only 50%” ability to tolerate PAP number and why the daily use of the PAP data and resulting adjustments tend to move that toward 90% when the PAP data is used.

Simply we need the long term tests to find out how much sleep varies night to night, week to week, month to month, season to season, year to year. Currently we are flying blind, and therefor we are not able to treat half of those with OSA and under treating many of those with PAP who can tolerate it.

I am happy to see things like the recent HomePAP study which showed that people actually do better when a Polysomnogram is not used but rather a home test (given a second night if the first night was false and a Polysomnogram if both nights are false) followed by a week long auto-PAP titration. Now, I am not at all surprised to see that a protocol which involves the night to night data for a week does better, not at all.

Honestly, one would think that researchers, strapped for cash and all as they ever are, would be clamoring to get all that available data which is currently taken every night. Yet, it seems that few doctors even make use of the data and I know of only one study that has made use of that data.

I know how useful it is since I have made use of it the last couple of years and have read of many others finding the same thing on the forums. As well, during a recent Dr. Park Expert Interview series he invited those who are successful using PAP to share the hows and whys. Use of PAP Data was universal!

If you feel the need to not argue with your husband over the kind of PAP used, well lets get him a smart brick whose data is gatherd automatically every night and checked for problems. He can have his cake and eat it too and you all can be a happy couple for a much longer time.

That is my vison for you and all,

Todzo

[ChicagoGranny]

Todzo,

You have not clearly read what I posted in this thread. My husband has been using software for about 15 years - starting with a big program he got from a very nice RT. I believe Encore Pro was the name of it. When I started CPAP there was not even a tiny question that I would use the software to get my therapy right.

My objection in this thread is that it sounds like a call for demands - demanding a process that will be mandatory for everyone involved in the process. A focus on the data process and not on the individual's health and peace of mind.

I too would like to see that everyone is diagnosed, treated and has data available. But this is going to work much better if it is voluntary on the providing side and the patient side.

My own sleep doctor only prescribes ResMed AutoSets and asks every patient to bring their card to every visit for checking of compliance and efficacy data. She is thrilled that I have software and check my data from time to time between visits.

Give it time. Rome was not built in one day. People are getting the message about efficacy data and so are the providers. No bureaucratic demands please!

But do tell all your friends how important the software has been for your therapy and let them decide for themselves.

Now calm down and have a nice day,

[Todzo]

Todzo,

You have not clearly read what I posted in this thread. My husband has been using software for about 15 years - starting with a big program he got from a very nice RT. I believe Encore Pro was the name of it. When I started CPAP there was not even a tiny question that I would use the software to get my therapy right.

My objection in this thread is that it sounds like a call for demands - demanding a process that will be mandatory for everyone involved in the process. A focus on the data process and not on the individual's health and peace of mind.

I too would like to see that everyone is diagnosed, treated and has data available. But this is going to work much better if it is voluntary on the providing side and the patient side.

My own sleep doctor only prescribes ResMed AutoSets and asks every patient to bring their card to every visit for checking of compliance and efficacy data. She is thrilled that I have software and check my data from time to time between visits.

Give it time. Rome was not built in one day. People are getting the message about efficacy data and so are the providers. No bureaucratic demands please!

But do tell all your friends how important the software has been for your therapy and let them decide for themselves.

Now calm down and have a nice day,

From ChicagoGranny's thread posts here:

“My husband likes his brick CPAP. A couple of times per year I will get him to sleep with one of our two data-capables and his report always looks good (AHI<2.0).”


ChicagoGranny,

I read that for you it is ok to let your husband fly blind in spite of the currently available alternatives I present here.

In the last 40 years that I have dealt with doctors I have watched the attitude go from "can I help you" to "I am the doctor and you must COMPLY with what I proscribe". So now they gather "compliance only" data using it to beat us over the head when obviously their own arrogance has blinded them from the ineffectiveness of what they proscribe. They remain unmoved to find a better way!

Simply, this does need to be dealt with.

Certainly we all would rather see them move back to "can I help you". Will they do it on their own or do they need help? We all hope that they will show themselves honest good people and that Government and legal intervention will not be necessary. The truth is we have waited too long already.

Encore Viewer, the only software available from Philips Respironics to us “non-pro” people, lacks even basic flow data. Philips Respironics, last I checked, had "no plans" to produce even this "basic data only" software for it's new machines. They apparently are not getting the message!!! Indeed they seem bound up in patients and the use of Government to get their business done as they wish.

We need to express our voices to Government to balance this.

I know what all of this has resulted in for me. I cannot stand by and just let that happen to others.

As for you and yours, good luck with that,

Todzo

[ChicagoGranny]

In the last 40 years that I have dealt with doctors I have watched the attitude go from "can I help you" to "I am the doctor and you must COMPLY with what I proscribe".

It sounds like you need to be better at selecting and culling doctors. My husband I have had several bad ones and have quickly culled them.

Between the two of us we currently are using seven doctors and each one of them is great and looks out for out best interest.

We need to express our voices to Government to balance this.

I will be fighting you always at this. I am on the opposing side of people like you who want a big-brother government to micromanage their affairs. You make things worse for everyone, yourself included.

I read that for you it is ok to let your husband fly blind in spite of the currently available alternatives I present here.

When my husband gets home this weekend I will ask him if he wants to give you his opinion of the stupid comments you made about him "flying blind".