The forum has a rule that says the we are not to provide information about how to adjust our machines.  Why?   What do you think about this?

I would assume it's a liability issue.

If I were to advise you how to adjust your machine pressure up or down and you injured yourself or someone else because you took that advice, I'd be liable and the forum would probably be liable as well for allowing my behavior.  

The only person you should consult about your pressure needs is a doctor who is certified in sleep medicine.


_________________
Brian
Severe OSA
19 cmH2O
Respironics M Series Plus
F&P Forma Full Face Mask

If I adjust my own machine, the only reason anyone besides me could be held liable is because the information is hidden in the first place.  Why is that?  Why do we allow ourselves to be made into children who are not allowed to know what the grownups know?

Randyleepublic,
 
What you do on the pressure setting for your PAP device is between you, your physician and your durable medical equipment company.
 
The American Sleep Apnea Association has a established as a guideline not to allow discussion of adjusting pressure setting on Positive Airway Pressure machines because the association does not want to be held responsible if an injury results to an individual based on information they received the from this Forum. Also we feel very strongly that effective treatment of sleep apnea is be done in concert with your physician and the supplier of the medical device.
 
There are other Internet message board that are less restrictive about this type of discussion. If you feel our posting guidelines are too strict, then you may be happier posting on one of the other Internet Message Boards.
 
Edward Grandi


_________________
Executive Director
American Sleep Apnea Association
6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650

It's your forum - you can make any rules that you want.  My thread, here in the late night, off topic section is intended to raise the issue of how these kinds of restrictions came to pass, and why people find them palatable.  In my opinion this is symptomatic of so much that is wrong, terribley wrong, with America today.  But I would like other's points of view on this subject, and that is why I started the thread.  

As for myself, I have full control of my machine.  Did you really think that perhaps I didn't???     

If anyone asked me to tell them how to adjust their machine I would tell them without a second's hesitation.  Not on this forum - I wouldn't disrespect your rules like that.  

As far as liability?  If someone sued me after I did them a favor like that and told them some information that they had no other way of getting, well, I can't rule out anything as an appropriate response to that.  ANYTHING.  

Anyone else find it strange that we live in such a society?

As someone who's worked for and with medical product manufacturers for 20+ years now, it's a mystery to me, too.  There are plenty of products with similar levels of risk where the doctor and patient discuss and decide to change a dosage or a setting, and those don't require a hands-on visit to a pharmacist or technician to make the change.

However, I don't see this as a manifestation of "so much that is wrong, terribley wrong, with America today".   Lots of things related to patient access and control of treatment have changed for the good in the last 20 years.  Honestly, I think it's just a case of the CPAP process not keeping up with consumer expectations.  (Any parallels to the technological advances of texting while driving I leave up to you .)

If you don't like this aspect of how your machine is designed, voice your concerns to the manufacturer directly, or via your doctor or the FDA.  If you need more information on how to do that, let me know.


_________________
Marie
Newbie with Severe OSA
ResMed S8 Elite II CPAP with EPR and H4i humidifier
ResMed Mirage Quattro full face mask
Contec CMS 50-E Pulse Oximeter

randyleepublic wrote:

The forum has a rule that says the we are not to provide information about how to adjust our machines.  Why?   What do you think about this?

Personally, I think that it is absurd to think that patients are not capable of adjusting their own settings. In my opinion, I think that these "practices" are in place to keep you going back to your physician. A lot of people want to make treating OSA much more difficult than it is, when the reality is that if you adjust your pressure and be patient, then you can be much more useful to your own therapy than any sleep lab in the world. The problem is that getting the education out on how to adjust and how much attention to detail that you need is never going to happen because patients are kept in the dark (regarding self therapy).

Its a money issue. A lot is made regarding liability, but there are many other treatments out there that are not looked over. How many companies are performing compliance checks on blood pressure medications?

If you adjust and are successful, then the pockets of the DMEs and physicians become less full and that is often frowned upon.

That is just my two cents!

The last two paragraphs of our whole guidelines follow.  I get so tired of people saying that we are in it for the money.  That is completely a falsehood.  We are all volunteers as moderators and as board members.  The only person on salary is Ed Grandi, our executive director.  If people would actually go to the main ASAA website, you would see that the ASSA only does patient advocacy and education.  We founded and support the A.W.A.K.E. network, we go to professional meetings to try to educate medical professionals, we try to have input on policies to make sure they are in the best interest of OSA patients.  Of course a lot of our meager funding (you can find our financial statement there too) is from manufacturers.  It certainly isn't from memberships.  If the >20,000 people who use this forum would become ASAA members, then we won't need outside funding.  It is funny that the same people who complain that we are money based do nothing to help us alleviate that.

I am really disappointed in this statement RAM_Sleep which you of course are applying to the ASAA as well.  I would think that after all of this time you would know better.

“Personally, I think that it is absurd to think that patients are not capable of adjusting their own settings. In my opinion, I think that these "practices" are in place to keep you going back to your physician…Its a money issue. A lot is made regarding liability, but there are many other treatments out there that are not looked over.”

Of course you are supposed to communicate with your physician, that is the whole point!  Read the guidelines!

Moderators are solely here to help people and ensure they get the best possible care by a strong partnership with a competent physician.  If people do not like our philosophies, instead of bashing us, use a different forum.  The commercial one is happy for those kinds of opinions.  It works well for them to since APAPs are more expensive than CPAPs.  The sales people push them without really understanding all that is involved or knowing their patient needs.  I know because I actually buy PAPs there and I am amazed at the lack of ethics and concern for patients that I have experienced.

"Posts about CPAP adjustments and self-treatment:
Although the ASAA advocates being proactive in ones treatment, we can not advocate or encourage making pressure adjustments or other CPAP clinical adjustments without consulting with your physician.  Please do not post instructions or how to guides for making adjustments or entering clinician menus to make adjustments.  We thank you for your understanding.  Do not post links to clinician menus or similar menus not authorized for access by manufacturers; these sorts of posts will be moderated.

The ASAA advocates being proactive in ones treatment by coordinating patient medical treatment with qualified and knowledgeable healthcare professionals.  Being proactive in ones treatment is not the same thing as self-treating or self-medicating ones medical condition.  Self-treatment/medication is defined as treatment without medical care.  People owe it to their health and well-being to coordinate their medical care with healthcare professionals familiar with their medical history.  We do not want readers of this forum to be convinced, from comments advocating self-treatment, to ignore or forego medical consultation and treatment.  Self-treatment/medication is a private, individual choice.  Forum discussion promoting self-treatment and self-medication may be moderated.   Your cooperation with this is greatly appreciated"

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I can't speak for the other posters, but I'm not discussing why changes in pressure can't be discussed in this forum.  Them's the rules, and I respect that.

And I don't see anything in this topic implying that the moderators of this forum are in it for the money.  

But I think a discussion of why patients aren't officially allowed to adjust their pressures is well worth having.  It's not consistent with other therapies I'm familiar with, both as a medical consumer and someone deeply involved in regulatory compliance for medical products.

And just to be clear that I'm complying with forum rules, I'm not advocating that anyone currently change their own pressure settings.  But I think people should be free to advocate for future change to those restrictions.

It wasn't that long ago that coaches weren't allowed in labor and delivery rooms, and that changed because of patient advocacy - and I think for the better.  Diabetes test equipment has moved from behind the pharmacist's counter, allowing customers to better look it over before purchasing, which has led to great leaps forward in the equipment available, pricing, and patient compliance.

If there are medical concerns about making pressure changes (besides the risk of centrals for which information is readily available), I'd really know more about them because I will have to educate my GP about them, and based on my O2 and AHI readings, I need to discuss with him ASAP.  I'm honestly having difficulty finding concise information on this topic on the Internet.  And getting ahold of the respiratory therapist at my DME, let along having more than a minute to discuss with him ... don't get me started.


_________________
Marie
Newbie with Severe OSA
ResMed S8 Elite II CPAP with EPR and H4i humidifier
ResMed Mirage Quattro full face mask
Contec CMS 50-E Pulse Oximeter

I guess that I wasnt clear in my post.

I do not think any member of this forum is in it for the money. This board has nothing to do with diagnosing sleep apnea and this board does not charge members to join.

My post was about sleep physicians and the field that surrounds them.

It is pretty simple really: A patient with a data capable machine has more than enough resources to be able to tell whether or not their treatment is adequate (optimal). Isnt that what that data is for? If the AHI begins to trend upward, then it is likely that something is amiss.

Lets say that the patient can correlate weight gain with an upward trending AHI and increased fatigue...maybe even snoring with the interface. It makes sense that the pressure is too low. Instead of being able to bump the pressure up a notch or two, that patient has to go to the doctor, have a sleep study, and go through the same routine as before. Its crazy. If offices couldnt bill the insurance company 2000-2500 dollars, then would the physician just use an empiracle increase or maybe offer a home study? Who knows.

The fact is that OSA and its treatment is a cash cow and many people are along for the ride.

Thats just how it is. How can a DME (or office) use your CPAP machine data to determine how your therapy is going, but the patient cant?

My apologies for being offensive, but if people see it another way, then feel free to type it out. Id be interested to read what others think. Can anyone explain why your office is able to bill 2500 for a single sleep study? Yes Yes, I know that the insurance doesnt authorize that amount, but still...

Anyway, my comments have nothing to do with the individual posters on this messageboard. none.

I think the discussion might want to go back to the original question... which was..

The forum has a rule that says the we are not to provide information about how to adjust our machines.  Why?

For me the issue is the difference between a patient advocate - peer counselor and offering medical advise. It's a fine line to walk in talking to others about OSA.

You might notice in some of my postings I will say..This is something you REALLY should talk to your sleep doctor about.. here are the kinds of questions I would be asking.... or.. remember this is just the opinion of a truck driver.. not a doctor...you probably should talk to your sleep doctor about this....

I think it is VERY appropriate that the guidlines of this forum prohibit giving information about changing pressures. Many readers might be safe to do so... but should the tone and content of the forum.. especially when reviewed or looked at by medical professionals show this type of attitude.

I work with truck drivers with the TFAC- A. W. A. K. E. chapter. One of our guidlines is that we will not offer advise or give information about how to flasify or "cheat" on an in-home sleep apnea test.  It's part of the tone we wanted to set for the chapter given the regulatory issues around truck drivers and sleep apnea.

I will admit to titrating by symptoms with my first CPAP back in 2002 when the pressure setting was a set screw on the side of the machine. With what I know now it was pretty stupid. Now.. having a fully data capable CPAP with a wireless interface that allows my treating physician to access data while I am on the road and modify presssures wirelessly.. it does not make sense for me to change my pressure myself.

Part of the "why" to not post information about how to change pressures in the forums... is to force readers / posters to develop the kind of relationship with their treating physician that discussing the need for a pressure change and getting the change is not a big deal. My treating sleep doctor deals with truck drivers all the time. I can call his office staff or e-mail him and go over a pressure change anytime we need to.. in fact about 2 months ago we did.. Pressure change all done wirelessly.

What do I think about the rule... I fully support it.. and thank Ed... and the other moderators who volunteer their time for making this a productive and informative forum.

Bob Stanton


_________________
Just a truck driver with sleep apnea

I think it makes perfect sense that the board doesn't advocate changing machine settings / entering clinician menus.  What makes Joe Public qualified to change his/her settings?

Even if you have a data capable machine, you're still making changes that aren't backed up by medical training.  Yes, there will be times when things seem obvious, but that still doesn't make it right.  The whole point in these things is to follow the therapy through, and give your medical professionals good, reliable data sets to work with.  If you start altering your settings, you're going to be invalidating the data sets and introducing new data to the mix.

How many days / weeks should you remain at one setting before changing it?  Are you symptoms 100% constant, so much that you can garuantee(sp) a change will be effective for all time?  You're making these choices based on hunches and your own beliefs, not medical training.  Who knows what course of therapy your consulting doctor is following?!

I'm a techie, and completely understand the desire to change settings based on data that *I've* analysed, but that doesn't make me the expert, and if I change these settings, then I'm screwing with what the experts are measuring.

If you purchased your rigs privately, then you're entitled to make any changes you like, heck, the manual probably tells you how.  But if you've been supplied the rig from a 3rd party, you best make sure that you're not mucking things up before you start making changes.

There's too many variables against changing settings and only a few in favour.  You might think you're making the right changes, but in fact altering the way the unit works from how it is supposed to.  You might screw up the settings and not be able to restore them, you might break the unit in some way - what are you going to do whilst you have no unit?  Suffer further?

Always consult your medical professionals, have trust in them.  Even though they can't always be trusted to get things right, allow them to be responsible for it and work it out with them.

And, to be brutally honest, it's not difficult to Google how to access clinical menus and such like.

crispian wrote:

I think it makes perfect sense that the board doesn't advocate changing machine settings / entering clinician menus.  What makes Joe Public qualified to change his/her settings?

Even if you have a data capable machine, you're still making changes that aren't backed up by medical training.  Yes, there will be times when things seem obvious, but that still doesn't make it right.  The whole point in these things is to follow the therapy through, and give your medical professionals good, reliable data sets to work with.  If you start altering your settings, you're going to be invalidating the data sets and introducing new data to the mix.

How many days / weeks should you remain at one setting before changing it?  Are you symptoms 100% constant, so much that you can garuantee(sp) a change will be effective for all time?  You're making these choices based on hunches and your own beliefs, not medical training.  Who knows what course of therapy your consulting doctor is following?!

I'm a techie, and completely understand the desire to change settings based on data that *I've* analysed, but that doesn't make me the expert, and if I change these settings, then I'm screwing with what the experts are measuring.

If you purchased your rigs privately, then you're entitled to make any changes you like, heck, the manual probably tells you how.  But if you've been supplied the rig from a 3rd party, you best make sure that you're not mucking things up before you start making changes.

There's too many variables against changing settings and only a few in favour.  You might think you're making the right changes, but in fact altering the way the unit works from how it is supposed to.  You might screw up the settings and not be able to restore them, you might break the unit in some way - what are you going to do whilst you have no unit?  Suffer further?

Always consult your medical professionals, have trust in them.  Even though they can't always be trusted to get things right, allow them to be responsible for it and work it out with them.

And, to be brutally honest, it's not difficult to Google how to access clinical menus and such like.

A few things to consider:

1- Many sleep studies are not scored as exact as can be. If you want proof, then go score studies from different labs (if you haven't). The problem is that the field of polysomnography has been a mismash of "qualified" people for years. Only now is it becoming organized. There are many techs out there that were trained on the job and have not taken their boards. The problem is trying to figure out how widespread the problem is.

2- The studies, equipment, and followups cost TOO much money. A sleep study for 2000- 2500 dollars? It is outrageous to think that someone has the cash to have multiple studies per year, if they are on a weight loss program or some other program that may result in the need for varying levels of pressure.

3- The field of sleep medicine has been a cash cow for years and a lot of doctors know that. Sure, the AASM is trying to eliminate this, but the reality is that there are many physicians out there treating a patient by glancing at the study results and making assumption after assumption. Sure, we can all go on and on about the need for a new physician, but again reality prevails. That is going to cost more money and it is possible that they will want to redo the study ($$ ching $$ ching $$). As a fellow technician myself, it is very easy to tell someone to continue going back to the doctor...as we are not paying the bills.

4- There are times when sleep apnea is made out to be so complex that the perception is that it takes a MD to authorize a pressure change. Trust me, a lot of patients would be irresponsible and not change with patience. I understand all of that and I understand why a forum needs to take a stance against advocating such changes. I am actually completely for patient based therapy. It is quite comical to speak to others who think that upping your machine by a cm h20 or 2 will kill a person... Umm... not comical, but it is a pure exaggeration.

There will always be a debate on whether or not a patient should be "allowed" to alter their own settings. Are there more downsides (compared to upsides)? That is also debatable. One problem is that healthcare is so dang expensive in this country and maybe that is the main issue here. Its costly to meet with the appropriate people regarding a change... however i have known plenty of instances where patients will call in to their DMEs because they cant tolerate the pressure (or their bed partner is still hearing snoring...only days after the titration)... and the DMEs get consent from the ordering physician to make changes. They are not making changes based on the data as the data may suggest that the lower pressure is inadequate. However thats ok because he is a doctor.... keep in mind before putting your life in their hands... there are awful doctors out there and yup there are plenty of doctors that barely pass their schooling... not all of our physicians are A+ honor students.

Take a look at some of the data presented on the forum... look at a few studies and you might see patients titrated and an optimal pressure reached without achieving supine sleep or even REM sleep. However, the pressure is scripted and the patient gets his new shiny machine. That patient is going home without proper treatment. Soo.... what should be done with that? Another sleep study (2400? or should the physician authorize an increase based on the trends of the study? What about leaks that the patient may have?). The physician is going to be throwing darts in the dark trying to figure out what is best in those instances.

There is such a fine line that it is hard to argue for advertising that patients change their settings, but i guess ill just say that i dont think that its the worst thing in the world, so long as they are patient and fully understand that results may vary.  :)

Just a few of my thoughts.