In my defense.

[cflame1]

Personally I think that having tech's in here... especially if they're also patients is fine...

But in the case of these two it's the attitude that's the problem.

Xerort... I really think that yours is better than the other @#$@@!$ person. If you would have started with a post that explained this, I think that you would have been better accepted.

Just note that we don't like to be called stupid or other names or lied to. The last part is what got the other @#%@%# person kicked out of here in the first place.

Yes we are a community, we try to help each other.

[cflame1]

Personally I think that having tech's in here... especially if they're also patients is fine...

But in the case of these two it's the attitude that's the problem.

Xerort... I really think that yours is better than the other @#$@@!$ person. If you would have started with a post that explained this, I think that you would have been better accepted.

Just note that we don't like to be called stupid or other names or lied to. The last part is what got the other @#%@%# person kicked out of here in the first place.

Yes we are a community, we try to help each other.

[bdp522]

Xerort,
Keep in mind that if we weren't having problems with our xpap therapy, we probably wouldn't be here. Some of us had less than acceptable experiences with sleep labs. Some of us never got see a sleep doctor. Some of us don't have RTs that will return a phone call(even during normal business hours) when there is an issue. Some of us have insurance that won't allow us to choose a different Sleep Doc or lab, or DME. Some of us can't afford to pay out of pocket for all of this even if means better quality, so we are stuck. We search the internet out of desperation and find sleep apnea forums. We find caring people, available 24/7, trying to help, giving ideas, giving support, some with hugs and some with 2x4's, but all trying to help us when no one else would. Some of us have done soooo much better with help from the people on this forum that we learn more and try to help others as we were helped. THAT is what this forum is about!

Personally I think that having tech's in here... especially if they're also patients is fine...

But in the case of these two it's the attitude that's the problem.

Xerort... I really think that yours is better than the other @#$@@!$ person. If you would have started with a post that explained this, I think that you would have been better accepted.

Just note that we don't like to be called stupid or other names or lied to. The last part is what got the other @#%@%# person kicked out of here in the first place.

Yes we are a community, we try to help each other.

Agreed!

Brenda

[snuginarug]

Gosh, xerort, you have a lot to say for someone who has joined approximately a a week ago.

People do focus in on one or two statements you might make because they do not have the time or energy to respond to each of your ten points, individually and at length. I have no idea what went on in other posts, but I can answer to point number 9 (or is it 8? I can't remember) in which you detail the thorough, considered, researched help you give each individual when assisting them choose a mask. For the most part, what you describe is rarely practiced, and lots of us have gotten pushed into unhelpful masks by callous, uninterested salespeople. I personally have a good DME that works with me very well. I think they do a good job. BUT and this is a big BUT... they returned my calls the same business day and set up appointments for the very next day. They seemed concerned about me, about my compliance, etc. They are GOOD. Many of us have had HORRIBLE DMEs. Not everyone in the business is as good as you describe yourself. So, after being ignored, brushed off, pushed around, LIED to, people take matters into their own hands and come here.

I think most of us have tried working with Docs and Techs and DMEs, and come away needing something that was not provided. Myself, I have an ok doc, but his one recommendation about my psychological horrors concerning the mask was "Go to sleep earlier." So I came here to get something my doc did not provide for me. I could have kept pestering my doc every week or so, and gotten nowhere real quick, except getting him and his whole office annoyed with me.

I happen to be a person with no desire or intention to change my pressure without consulting my doctor first. But as I said, I have an ok doc. He at least titrated me properly. How do I know this? I bought the software and have been checking my numbers every couple of days. Which is more than he did. He looked at my compliance data and sent me on my merry way with the only help being "Go to sleep earlier." Anyway, back to my point... I have an ok doc. Many people here do not, and have no way of getting one, due to expense, losing insurance coverage, living in an isolated area, etc. So I can see why some people take things into their own hands.

HOWEVER, some take things too far, shun all docs, even good ones. They have their reasons for this attitude. I do not share this attitude. And guess what? I can CHOOSE TO IGNORE THEM. We're all adults here, and in the end we are all responsible for ourselves. If I don't like what one person says, I can ignore them. If I don't like what most people say, I can leave. There are other CPAP forums, and I think you would be more comfortable in one of those. Why not simply go to another forum if you don't like this one? You're not going to change anyone's mind.

Let me just say, I have no job. I am disabled. I have plenty of time on my hands. That's why I have time to respond so thoroughly to ONE of the TEN points you made. I wonder where you get all this time to make so many posts, and in particular this especially long post. If you do have a job, you're spending way too much of your life focusing on trying to change something that will not change. If you have this much time on your hands, in addition to your job, you must have a pretty empty life. I suggest you go forth and live your own life and stop trying to do the impossible.

EDIT: while I feel that what i have said above is true in general, I feel I should publicly apologize about my personal comments about xerort. I got pretty upset by calist, and transferred my upsetness about him to xerort. I was going to completely erase my entire post out of embarrassment, but decided I should explain and apologize instead. All the personal remarks really should have been addressed to calist, since I really was reacting, illogically, to xerort's post as if it had been written by calist. I'm sorry, xerort, I hope you will accept my apology.

[jasper]

I just want to respond to the "why we change pressure" issue. I was originally titrated at 14 cm (and given an M Series Plus). I requested an Rx from my sleep doc for an APAP machine, and indeed he gave me one. The pressure setting specified was 4 to 20 cm. Anyone who's tried that will probably liken it to holding on to a tiger's tail (never tried it myself). So.... I changed my limits to 11 and 16, and I've never slept better. Thanks to all on the forum who pointed me in the right direction.

[BlackSpinner]

Please provide any State or Federal statute which implies or states that it is illegal for a patient to adjust or change the settings on a legally prescribed CPAP machine which he/she is only using on his/her-self.

I have to warn you xerort, this is exactly what they are going to do. They will ignore all other statements you make and focus on a single sentence until they have blown it so completely out of proportion that it becomes deluded, out of context and more like an accusation than an actual request for clarity. More importantly however they hope that by focusing on that single statement they will be able to destract others from everything else you have said or plan to say.

One stupid inaccurate statement invalidates all the rest of the post. This means you probably don't know as much as you think you do. Also this is an international forum - US laws don 't apply anywhere else. Many places don't even need a prescription for a cpap machine.

[So Well]

xerort

Oh there are techs here who make excellent contributions and are appreciated by the patients.

Being a tech is not your problem.

You are an arrogant scumbag interested only in hoisting yourself by your own petard. If allowed you will only do damage to patients coming to the forum.

Go read how many times you typed "I" in your OP. Read how many boasts you inserted. Your interests are only self-centered.

There is something missing in your life and you are looking to fill the void with useless spoutings in this forum.

For the sake of the patients wandering in here for desperately needed help and not understanding the politics, I hope the regulars here, both patients and techs, will watch for your posts and knock you back under your slimy rock every time you pop out.

Get back to your mushroom farming.

[Tielman]

As far as not being illegal, I have always been told, by both my employers and my college professors (one of which is nationally respected therapist) that it is illegal, as it is practicing medicine without a liscense. However, I most definitly could be incorrect.

I believe you are correct in that a DME could have legal issues with changing the pressure for a patient without having that reviewed by either a RT, or a Dr.

What you are arguing against is the patient being allowed to adjust your pressure.

I complained to my Sleep Center (at a hospital) about issues I was having, and the person on the end (who was not a Dr, or an RT) stated: "increase your pressure by 2cm and try that for a month. If that doesn't work, call us back". After 4 weeks without improvement, I sent a fax in with a lot of details. The Dr, and RT reviewed it, and came back with the following: "Set your pressure 2 cm higher than anything you have tried. Give that some time and let us know".

Many others in the forum have had the same or similar experiences. Those with APAPs have been setup with ranges such as 4cm - 20 cm (practically useless IMHO).

Most of the support here you will see statements such as: Check with your Dr., Call the DME, See if an RT can help you, etc. When these don't work, and we can't get any support we try the best we can to resolve the issue.

By the way, I believe I have solved my issue, and it had nothing to do with what the Dr., RT, and Assistant told me. I have silent GERD, and sleeping on a 9" incline along with acid reducers (and putting my pressure back to 11 cm) has SIGNIFICANTLY resolved my issues. Two forum members were the ones that suggested two different possible issues: JohnB came up with the silent GERD, and TorontoCPAPGuy came up with some medicine issues (to high of BP medicine for one). None of my regular Drs came up with either of these two, but the past history and experience of these forum members came to my rescue and helped resolve much of my issues.

You can say what you like, but this Forum is a lifesaver to many, including me.

My question to you is this: If the Drs and RTs are so great, then why is the standard rate of compliance with CPAP only 50%??

[tonycog]

My sleep doctor (whom I like and think is a good doctor) told me that it was not possible for a patient to change the pressure settings on his machine. I told him "I know how to do it." He repeated that it was not possible because the patient was locked out of that part of the machine. I replied "I do know how to do it. Google is my friend." Then he understood. He looked at his PA and they both laughed when they realized that I really did know how to do it.

My doctor realizes that I have read and read and read and that I have a reasonable, or better, understanding of my condition and how it is being treated. Then my doctor told me "I don't have any problem with you making small adjustments to your pressures if you want to see if it helps."

So now what? Did my doctor just break the law? When I adjusted my pressure slightly, did I? I was following my doctor's advice.

The RT's here who preach that "it is illegal" for a patient to change his own pressures have been asked repeatedly to provide any proof beyond "that's what I was told". None ever have to my knowledge. Most just leave when they keep preaching and we keep asking for proof. Please show us some proof that this is illegal. It is illegal for you to change my settings without orders from a doctor, but there is no such law preventing me from doing so. If you can find proof of such a law, we all really want to see it. Otherwise, you need to stop. You are dispensing incorrect advice/information.

If you guys want to post here about all things XPAP, we will listen. Some of us will argue and disagree, some will thank you and many others will just read your thoughts, possibly try your suggestions and see how they work. But do not assume that we are all dumb sheep who are unwilling or unable to understand our respiratory issues and how they are being treated.

Tony

[Bons]

Xerort can't be calist - his spelling is too good.

Xerort,
I think that you could be a helpful member of this forum if you would work with us instead of against us. It is illegal for you to change machines without authorization, but not for the patient. For some of us, like me, because I have little mind for technical matters, it would be inadvisable. I don't like the settings on my ASV, but I would prefer to have a doctor do it instead of trying things on my own (though I did tweak the breaths per minute because I know that won't kill me - I'm afraid to tweak the rise time and other stuff that's probably wrong). I have seen people who are comfortable with making their own changes warn others not to treat themselves without medical advice - like the guy who wanted to use a cast-off cpap to treat his own snoring without knowing whether or not he has OSA being told to get a diagnosis of his medical problems.
Unfortunately, some of us have come to mistrust medical professionals and so we learn to take matters into our own hands. For example, my doctor ordered an inlab titration for a bipap, then sent me home with it set at 4-20 for two weeks. Why charge me for the lab study if he was going to do that? Naturally my centrals shot up because of the wide parameter. At that point, he ordered an ASV without ever titrating it and not even telling me he was switching me (I found out when the DME told me to pick it up). The DME tech showed me how to plug the thing in, which is the only explanation I've ever gotten about how it works or what it does. In 16 days, neither the doctor or DME has called to see how things are going. I have no idea how the doctor chose any of the settings. I have chosen to switch doctors rather than try to set things myself because I know this machine could cause heart issues if I screw things up (if the idiot doctor hasn't already). But I surely understand why others choose to tweak their pressures just one or two cm. to try to work things out on their own.

[allend]

Xerort,
Keep in mind that if we weren't having problems with our xpap therapy, we probably wouldn't be here. Some of us had less than acceptable experiences with sleep labs. Some of us never got see a sleep doctor. Some of us don't have RTs that will return a phone call(even during normal business hours) when there is an issue. Some of us have insurance that won't allow us to choose a different Sleep Doc or lab, or DME. Some of us can't afford to pay out of pocket for all of this even if means better quality, so we are stuck. We search the internet out of desperation and find sleep apnea forums. We find caring people, available 24/7, trying to help, giving ideas, giving support, some with hugs and some with 2x4's, but all trying to help us when no one else would. Some of us have done soooo much better with help from the people on this forum that we learn more and try to help others as we were helped. THAT is what this forum is about!

Personally I think that having tech's in here... especially if they're also patients is fine...

Brenda, its really just as simple as you said. We come here to optimize our sleep experience and we utilize the software to tell us how we are doing. Since many things can affect why you are tired from weight, to exercise, lighting, the kind of work we do, the mask you use, the climate and the temperature and coinditions where we work, the foods we eat, allergies, stress, medications and diabetes, just being tired isn't always enough.

When I got my vpap auto 25 I was lazy and didn't get a card reader and the software because the RT at the DME came to my house ands et up my machine or approved the setup I set the machine for. She never looked at the Pressure Support which I set as the difference between the Ipap and the Epap. It was a mistake for that machine. Had I been monitoring my sleep, I would have seen right away that I was having an AHI over 20! That high an AHI is horrible for therapy but I didn't know, and the ramifications could have been serious because it was affecting my ability to concentrate and drive.

Then comes the most important way to live and that is to never trust anyone totally when you can check on what they are doing. The dispensing of cpap and bipaps are a retail function and those who do it, do thousands a year. It's very easy to make a mistake. Only an idiot would allow that to continue. I was that idiot for too long. I came here because I was having problems and I realized I should have been self monitoring. Do I have to physically change my machine myself, no because I can speak to my doctor and tell him what i need and I can drive over to the DME and have her change the machine. If for some reason, that can't be done because of insurance, distance or whatever, I can change the machine myself but I cannot rely on anyone but me to do the day to day monitoring.

By the way, I started changing my pressures when I got my Respironics bipap auto m. At the time, my dr. didn't feel the evidence was conclusive about AUTO. So, I made 11/9 an auto 14/6 and I did great until the machine broke.

The consequneces of not monitoring your progress are too severe to be too lazy to do it. Even feeling good isn't enough because good compared to what?

[SleepingUgly]

Most of us don't care whether it is or is not legal to change our settings. Period. So let's not argue about whether it's legal or not anymore, because it's irrelevant.

We have heard you that you think patients should not change their settings. You've heard us that those of us who want to will do it regardless of whether you think it's advisable and regardless of whether it is legal or illegal. If you want to participate here and want your contributions accepted, you have to be quiet about this issue of patients changing their settings. If you can't stop saying that patients shouldn't change their settings, nothing else you say will be heard. Lots of people on this thread have explained to you the positions we patients are in, and why we have had to rely on ourselves, so I'm not going to repeat that. Just accept that you either need to be quiet on that issue or you, and your advice, will not be accepted here.

We are a crowd who educates ourselves and each other. The way I see it, medical professionals, including RTs and sleep techs, either come here to COLLABORATE with us, or there is no purpose to their presence here. Most of us would be happy to have competent medical professionals who want to help us, as long as they don't have condescending attitudes and disparage our right to educate ourselves and participate actively in our treatment. So I disagree with the poster who said that we don't want professionals here. I think that most of us do want professionals with supportive attitudes here. If a professional has that collaborative attitude and respects our knowledge, he will even learn a lot here. Someone who finds the possibility of learning from patients threatening will not fit in well here.

[chunkyfrog]

Our sleep tech did NOT have a cow when my husband set his machine for APAP mode and then proceeded to set his own pressure range,
based on his own sleep study. He merely pointed out that my husband was the patient and could do things he could not.
He also acknowledged that my husband and I probably know more about our machines than he does.
As it turns out, the prescription was for 12 cm H2O; but my husband's 95th percentile pressure is around 10.2 or less.
Imagine the central apneas that could be generated by using too high a pressure--except that he couldn't even BREATHE at 12 cm--and would have NEVER used the machine. He is 100% compliant because his therapy works and is comfortable. Let's hear it for an intelligent RPSGT and a patient who knows what he NEEDS.
I suspect that these trolls are probably unemployed because of their bad attitude, and want to blame somebody else for it.
WHATEVER!

[mars]

Wether it is deleting posts (as you have seen), trolling in other threads (as you have seen), wild accusations (as you have seen) there are only two ways that this process will end. Either you will get fed up and walk away (which they are hoping) or they will have you banned (which they can easily do). .

Hi SleepTechulous

Wether it is deleting posts (as you have seen)

Posts that are deleted by a Forum member that are not spam are reinstated by Forum Admin, and the member deleting that post, other than the original poster, is likley to get their "delete spam" facility withdrawn.

or they will have you banned (which they can easily do).

This statement is totally untrue, as everyone knows who has been on the Forum for a while. See Johhny's recent post about this - viewtopic/t56555/Calist-Banned.html

So by all means take sides in the discussion, or give advice as you see fit. But misrepresenting the Forum rules means your credibility becomes tainted.

cheers

Mars

[Slartybartfast]

Gosh, xerort, you have a lot to say for someone who has joined approximately a a week ago. [Snip]

Too bad the forum software doesn't appear to support the creation of polls. Such a feature could be entertaining, and illuminating to the newcomers who might not be aware of the genesis of all the sentiments that have been expressed. I mean, even the title of this thread speaks volumes.