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Peter Farrell, the Founder of ResMed, is notorious in the Sleep Medicine establishment for saying “The only way you can get injured by one of our machines, at least the low level ones, is if somebody picks the goddamn thing up and slams you over the head with it.”

But still RTs and other sleep professionals cringe at the idea of letting a patient adjust his or her own pressure settings, based on the notion that high pressures can kill you.  Furthermore, they say that no amount of disclosure to the patient of possible risks will justify letting the pressures change without a doctor's say so.

What's the truth?


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So you can say without a doubt that everyone that tweaks their pressure has all of the knowledge they need to do so?

 

If you support auto-titration then you support starting a person at a range of 4-20cm.

j n k said:

I agree that if a patient is told by his doc that use of an APAP could kill him, he probably shouldn't be self-tweaking his own pressures.

 

But an OSA patient using an APAP is smart to get his minimum up within a cm or two of what is needed to prevent apneas instead of leaving the minimum down at 4 out of sheer laziness.

 

And if anyone finds that a cmH2O more pressure results in fewer events overall and feeling better, that person's doc is unlikely to mind that, whether the RT at the DME minds it or not. That's why I would likely tell my doc what I was doing, but not the DME RT. But hey, that's just me.

I do not believe that to be true. I am not saying that anyone is stupid or ingnorant, but there are some that have no buisness changing anything. If you have never been able to figure out your TV remote then you should probably leave your PAP alone. People like yourself have taken the time to aquire the knowledge to take charge of your health and therapy. That is completely different from someone who just read a DVD manual and thinks they understand the neuromuscular characteristics of sleep.  

j n k said:

If they made it past the second grade and know how to add and subtract, yes.

 

I support ideal pressures, whether in APAP mode or CPAP mode. 4-20 ain't ideal for anybody.

That's not true and you know it! There are many people who just do not understand electronics. Not everyone thinks as you or I any more than I can claim that I think like everyone else. We are not all the same.

 

Everyone should know how to change a tire, their air filter, or a spark plug. They don't though. people die everyday from untreated apnea. I am sure that a few die from under/over treatment as well. Unfortuantely the cororners report rarely reflects that the person had OSA untreated or treated. Usually Heart attack or failure is the the cause regardless of how they slept.

 

As I have said before there is no such thing as "plain-vanilla" or "simple" OSA. Each case presents unique problems for each victim. Come spend a week with me and I will prove it to you. As long as we continue to think of it as a simple problem with a simple solution we will continue to travel through sleep with blinders. What has worked for you may not work for another. It could in fact go the opposite direction. No it probably will not result in an instant death. However It may slow down the healing process and cause a worsening of the situation. Not to mentioning screwing with your sleep could cause fatigue that puts others in danger.  Reaction time and good sleep go hand and hand. This would be vey unfortunate for the driving "pap tweaker" that hit my child. Cause and Effect jnk.

I don't know how to change a spark plug.  Cars aren't like they used to be.  I can change a tire, change my air filter, keep air in my tires and the gas tank above empty.  I'm a regular CPAP user with a nursing background and a lot of time on this and other forums.  I have also had two docs who can't seem to titrate me correctly.  Bet they don't change their own spark plugs.  I'm a regular CPAPer who can use a remote and knows my way around the clinical menu.  This is in no way an attack on the sleep industry, but an affirmation that there are those capable of self titration. Though  I cringe

when I hear of someone with a week or two on the machine taking it into their own hands

Mary Z:  I TOTALLY agree!
Thanks, Jeff.

j n k said:

Self-tweaking is scientifically verified as a plausible approach, although there are always some patients who are incapable of normal functioning:

 

"This study demonstrates that patients with OSA are capable of effective self-titration of CPAP treatment at home. . . . This strategy would not be feasible for intellectually disadvantaged patients and those with physical handicaps that would severely limit vision and/or manual dexterity."--http://ajrccm.atsjournals.org/cgi/content/full/167/5/716

 

 

"Though  I cringe

when I hear of someone with a week or two on the machine taking it into their own hands"

 

This is exactly what I am talking about Mary. I do not believe that the information should be handed out willy-nilly(LOL That word again). A certain amount of knowledge should be aquired prior to obtaining the secret handshake. I also believe that both the doc and the DME should be involved. I like the idea of an open classroom. I think we would find that some people would either no show or just not get it.

 

I am not against tweaking or even self titrating. As a tech I do HAVE TO follow the rules. RIght now these rules require that the doc be involved. Despite the problems this may cause some of you it is a good rule.
Mary Z said:

I don't know how to change a spark plug.  Cars aren't like they used to be.  I can change a tire, change my air filter, keep air in my tires and the gas tank above empty.  I'm a regular CPAP user with a nursing background and a lot of time on this and other forums.  I have also had two docs who can't seem to titrate me correctly.  Bet they don't change their own spark plugs.  I'm a regular CPAPer who can use a remote and knows my way around the clinical menu.  This is in no way an attack on the sleep industry, but an affirmation that there are those capable of self titration. Though  I cringe

when I hear of someone with a week or two on the machine taking it into their own hands

This is a great study jnk. It however does not represent a significant % of anything. I also would like you to take notice that it does not note what % of those people were previously or currently on PAP. Of the meger 28 people onvolve over 30% did not finish. I think that proves my point much more than your own.

j n k said:

Self-tweaking is scientifically verified as a plausible approach, although there are always some patients who are incapable of normal functioning:

 

"This study demonstrates that patients with OSA are capable of effective self-titration of CPAP treatment at home. . . . This strategy would not be feasible for intellectually disadvantaged patients and those with physical handicaps that would severely limit vision and/or manual dexterity."--http://ajrccm.atsjournals.org/cgi/content/full/167/5/716

 

 

I think the whole point is that some of us are going to self titrate.  Some who should not be touching their machines will be changing their numbers during the first week and some with a lot of knowledge and experience will be carefully tweaking.  The sleep industry has failed some of us either through carelessness, complicated situations, misdiagnosis or whatever.  True some of us haven't given the sleep industry (our docs specifically) a fair shake.  But I am going to tweak.  You can help me to do it safely, you can warn new people to give it some time, you can encourage us to see our doctors.  Whatever, but I have done my part as far as the medical community and now I'll take it on myself.  Three years, six sleep studies, two doctors.  I'll go once a year and keep my script up to date and that's it for now.
You know- I think I get it- I really do.  Only  laypeople can help one another to tweak and do it safely.  Those of you with credentials and jobs on the line can't help us.  On other forums you can get advice on using auto safely, on adjusting EPR, even Ti Min, Ti Max, and Rise time, the difference in BPAP, CPAP and which might suit best.  We are cautioned to make small changes, wait at least a week to judge effectiveness.  Take notes on how we feel, how our numbers are.  When to see the doc.  When to leave it alone.  Information that actually gives some helpful guidelines is much appreciated from what I read, and that's how I feel.

 

Having that day to day info looked at would require time and money "hand holding by a pro would be the way to go " That would be a way to get over the hurdled of keeping everybody in the loop. A daily download while  adjusting ......wouldnt that be a possible solution ? 

 

j n k said:

Figuring out insulin is hard (and dangerous). Figuring out air pressure is easy (and safe).

 

But no one will ever care about getting either one just right day-to-day more than the patient.

Chris, I think even a weekly download would suit our purposes.  A tech at the doc's office could easily check a weeks worth of data from the data card, or a report you emailed of faxed to them, get with the doc if necessary.  Or the pros could have guidelines for tweaking- like giving insulin.

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