[Pressure] You CAN Adjust your own CPAP Pressure

[kaiasgram]

Well I totally disagree, along with, I suppose, many users of this board. And my Dr. and my Respiratory therapist agree with me.

As to your arguments, I might have gotten around to reading them if you'd thrown in the odd paragraph break. But my eyes and mind are no longer up to reading a thousand or so words all smushed together in one long line.

Lol, well then you missed the part where about halfway through the rant he revealed that he works for a DME.

This happens periodically on all the sleep apnea forums. An RT or DME rep feels slighted or threatened by the idea of a competent person learning how and when to make adjustments to keep their therapy on track. They come onto the forum with a longwinded rant trying to whip up hysteria with the claims of illegality, lethal pressure changes, etc. What's laughable is that many of them hand out bricks to patients so in reality they have nothing more to base pressure changes on than do the patients themselves.

No one advocates for blind dial-spinning. But any reasonably intelligent and motivated person can learn how to responsibly manage their own CPAP therapy.

[PaulaO2]

You came here, Toby, with the intent to stir the pot. That's obvious from your first post where you jumped to conclusions and went on a lecture. But you'll find you won't get anyone angry. Instead, we're laughing and/or shaking our heads. It's sad, really, how far apart you seem to be from your consumers. This board is full of patients who have learned to become empowered about their own health matters. We discuss the pros and cons of a lot of different aspects of being hoseheads. If you take the time to read more (which you didn't before you spouted off your first post), you will find that we probably discourage changing pressure just as often as we discuss the possibility of changing it. We advocate making changes slowly, looking for trends. We also advocate self-care in terms of mask choices. Fitting guides are found all over the internet, including from the manufacturers themselves. YouTube is chock full o' videos on how to fit a mask correctly. I would guess that well over 90% of us learn how to fit our mask from sources other than the RTs.

I find it amazing that it is dangerous and allegedly illegal to adjust a CPAP pressure but not dangerous or illegal to administer our own insulin and other undoubtedly deadly medications.

And as a person who lives in NC, I believe the quality of care from suppliers went down drastically when only RTs could do changes and fittings. I stopped being a patient who was spoken to like an adult and became a consumer who was too stoopid to understand how to manage my own health.

[PaulaO2]

(putting on my Moderator hat and getting a grasp on my new, shiny hammer)

Let us be civil to each other, no matter how different our opinions. Name calling or statements of parentage will not be tolerated. See #2 in The Rules. This thread will be closed if it degrades into a mocking match.

[zonk]

It's not something to play around with or tell somebody that it is ok to do.

With my machine "AirSense 10 AutoSet", no need to play around, the machine play all by itself, automatically adjust pressure on breath breath basis all night long. Normally, doctors, uses the 95th percentile pressure of the AutoSet to set fixed pressure machines

[Toby6698]

Well, forgive me for not using proper grammar while giving good, sound and legit reasons for my argument against what you are encouraging here. I wasn't trying to be ugly or rude and even mentioned that I have no problem with someone changing their own pressures, provided that a physician has evaluated them and their reasons for feeling a pressure change is needed.
I even provided a real live situation to back my argument up, along with solutions for those who need to be evaluated for pressure needs and changes, without costing them more than an office visit with their doctor.
Forgive me for even trying to have a professional conversation with you without making jabs about your writing/spelling errors. It wasn't meant for anything more than to explain why I had disagreements with someone assuming what maybe the cause of physical/medical changes in their body, and I am completely amazed at any physician or RT that feels it is appropriate for someone to self diagnose and self treat changes in their sleep apnea.

[Toby6698]

You came here, Toby, with the intent to stir the pot. That's obvious from your first post where you jumped to conclusions and went on a lecture. But you'll find you won't get anyone angry. Instead, we're laughing and/or shaking our heads. It's sad, really, how far apart you seem to be from your consumers. This board is full of patients who have learned to become empowered about their own health matters. We discuss the pros and cons of a lot of different aspects of being hoseheads. If you take the time to read more (which you didn't before you spouted off your first post), you will find that we probably discourage changing pressure just as often as we discuss the possibility of changing it. We advocate making changes slowly, looking for trends. We also advocate self-care in terms of mask choices. Fitting guides are found all over the internet, including from the manufacturers themselves. YouTube is chock full o' videos on how to fit a mask correctly. I would guess that well over 90% of us learn how to fit our mask from sources other than the RTs.

I find it amazing that it is dangerous and allegedly illegal to adjust a CPAP pressure but not dangerous or illegal to administer our own insulin and other undoubtedly deadly medications.

And as a person who lives in NC, I believe the quality of care from suppliers went down drastically when only RTs could do changes and fittings. I stopped being a patient who was spoken to like an adult and became a consumer who was too stoopid to understand how to manage my own health.

[DariaVader]

when we are graciously given the boon of a machine that collects data, and when we have educated ourselves as to what that data means, there is no one better to figure it out than ourselves - since we are all different. This therapy is difficult to get comfortable with! Those of us who take it into our own hands to adjust settings have the very best track record of sticking with the program!

The DR, and the DME who pay attention to the individual needs and data are rare! Many people on this board are only enjoying therapy because of the education here. For myself, I do have a doc who pays attention to the data... and I consult with him regarding any changes - BUT it is a consultation. The days of medical gods are over for me.

The risks of high pressure exist, but are negligible compared to even adding oxygen, much less take as needed meds, meds like insulin which must be adjusted on a daily basis in response to data.... Bottom line for me: I trust my own judgement better than *anyone* elses when it is something I have put my mental focus to.

[Toby6698]

Well, I guess that I first must apologize for giving the impression or actually stirring the pot. I did not intend to do that at all, and that is the truth.

I actually came across this site while searching for some info on starting up my own business, and I will admit, that I jumped to defense immediately, when I read the very 1st part of your post. I also admitted in my 1st post that I had not read all of it and in my 2nd post did not say that I totally disagreed with you and that I fully get what you are talking about.

As I mentioned in my 1st post, there was a big ordeal with the company that I work for telling staff who were brought off of the street, without ANY formal education, trained to answer phones and drive a delivery van, being told that they were authorized to set up CPAP machines, change pressures and perform mask fittings. Not only were they trying to give the jobs of the RTs away, but they actually expected the RTs to train them and then be without a job, while their licenses remained on display in the store and they would remain liable for all of these set ups being performed by any and everybody. So yes, I can become very defensive over my job. I apologize for jumping the gun before reading all of it.

After reading all of it, I posted that I got what you were saying that I understand and appreciate your view on this, but I disagreed with a person self diagnosing and treating their sleep apnea changes. I have no problem with someone knowing how to change their machine, or making the changes, providing a medical doctor has evaluated them and prescribes the pressure changes.

I guess if I had created paragraph's in my writing that you would have read far enough and read about the experience I had encountered with a patient who wanted me to increase his pressures or show him how to do it, without a prescription. Even I felt that the patient was correct in his thinking and that a pressure increase was probably all that he needed. But, I am so glad that I didn't give in to his requests and begging to show him how to adjust the machine, because if I had of, he probably would've delayed going to see his doctor even longer and would not have had the small cell malignant tumor in his esophagus that was causing the increased blockage in his airway as soon as he did. A rare event, but just trying to say that it is not always wise to assume what has or is causing the changes in your body or with sleep apnea. This specific event made a definite believer out of me.

I never said that it took a licensed person to understand or know how to operate a pap machine or to fit a mask, just only stated that some state laws require a license through their respiratory care board to legally perform them. I agree with you, that those laws are meant within the business/clinical settings and are intended to protect the profession and the jobs within them, along with misrepresentation. I have actually directed many patients who come in our store to shop online for their masks and supplies, so that they can obtain them much cheaper. I also offer them assistance with their masks bought online, if they ask me too, because not everyone can figure it out (or they just request help it as an excuse to get a little TLC and attention...lol, some people would sit back and let you wear their machine for them if you would...lol)

The point of my 2nd post, was only to say that I do not agree with or feel it is appropriate to encourage people to self diagnose or treat themselves, not to say that people should not have say so or control in their care or insinuate that people without medical training or licenses are idiots or incompetent of sound judgement. I just feel that it is smarter and safer to have a physician evaluate any changes or needs, just to confirm what the actual problem and needs are.

I also mentioned that even if someone's machine is old and they are financially struggling that there are solutions to find out a safe pressure to set their machine on without costing them an arm and a leg. Most DME companies will provide a free trial on an auto adjusting machine for a few weeks to assist a physician in determining a new pressure and their RT will set the machine for free, even if the person has never purchased a single item from them. The DME's I have worked for will do that as a courtesy to the physician and the patient.

So I do apologize, for coming across as attacking or trying to stir your pot.

[surferdude2]

Hi Toby6698, You've been hanging with the wrong crowd.

Stick around here and read some of the old posts and you'll get better insight as to what a valuable resource this is to the members.

Since you are a licensed professional, it behooves you to stay at the top of your game. This is a good place to do that. We provide that service to several others in your profession and have some of the top people in the field that frequently monitor the threads. They often comment with in depth information about the current research in this field.

Dude

[kaiasgram]

Toby, I really want to commend you for acknowledging your defensiveness. Not everyone can do that. I want to respond to you in a thoughtful way too.

Here's the thing about your story. You write:

it is not always wise to assume what has or is causing the changes in your body or with sleep apnea

Of course. And if this man came into your office with no understanding of how his machine worked and no data reports indicating the need for a pressure adjustment, and was in fact just assuming that he must need a change in pressure because he felt something was different, then you did the correct thing in declining to change his pressure or show him how to change it. Here on the forum we would also strongly discourage ill-informed people from changing their pressure(s) solely on the basis of their assumption that they must need a pressure change. Your story is really about chance occurrences (i.e. the man had a tumor) and not the question of whether people can be educated to responsibly manage their CPAP therapy.

I also have a story that highlights yet another point: About a year ago a woman came onto another sleep apnea forum I was active on. She was in the early stages of her CPAP therapy and was having a terrible time, sleeping very poorly and feeling wretched during the day. She described her initial sleep study and her doctor's recommendation:

Recommendation was to treat with an auto BiPAP device with a minimum pressure of 6 and maximum 16 cm of water pressure

Though she did not yet understand all the data from her machine, she included in her post a screenshot of her SleepyHead report for a typical night since she started on the machine. Here it is. Aside from the jaw-dropping AHI, do you see what the problem is?




It jumped out at me after a few seconds of staring at the report and I replied:

Your Sleepyhead screenshot is showing that you are using a fixed bilevel machine, not an auto bilevel. You do not have a range of pressures at all -- instead you have a constant fixed inhale pressure (IPAP) of 16, and a constant fixed exhale pressure (EPAP) of 6. That is why your pressure lines are straight and unchanging in the SH Pressure graph.

Whatever the case, you are throwing an extremely high number of centrals on this machine at those pressure settings. I'm not surprised that swapping out your mask did not significantly help. Your leak numbers are good.

This woman was given the wrong machine. She had called her doctor's office and the DME prior to posting on the forum, and the only help she received was to be given a new mask and told to give it a little more time. In fact, it turned out that a clerical error had occurred when the sleep doctor's assistant missed the word "auto" in the doctor's order, and as a result, sent a prescription to the DME for the wrong machine. An educated patient, not one of the sleep professionals she consulted, was able to see the problem by reading the SleepyHead report and helped her get things straightened out. Not surprisingly she was eventually put on ASV.

Like the man in your story, the woman in my story was in a potentially dangerous situation. And like your story, mine is a story about chance and about a rare occurrence. But based on this story I would never conclude that we should regard all doctors and sleep professionals as incompetent. Similarly, your story does not logically lead to the conclusion that all patients should be considered unable to make informed, responsible decisions about their PAP therapy.

By opening your mind (as increasing numbers of sleep doctors are starting to do) to the realization that patients really can be taught to monitor and manage their PAP therapy responsibly you might have a much more successful business/practice. A good mentor for you might be the RPSGT who runs that small sleep apnea forum where the woman in my story came asking for help.

I wish you well.