Controlling our own treatment

Rested Gal,

I do think Beach Girl wants to help, but at the same time she has an alarming tendency towards fear mongering. In the very first post you include on your list by Beach Girl, she states in reference to why one shouldn't use vasoline with CPAP masks:

any other kind of oil based lubricant will break down your mask and in the event of a spark can ignite.

Now I don't know about you, but I really think worrying about vasoline igniting in the presence of a spark crosses the line into fear mongering. There are lots of reasons to avoid putting vasoline on your face when you then need to put on a CPAP mask, but this is not one of them.

Do you think that Beach Girl has eliminated all skin care products containing petroleum jelly from her own medicine cabinet for fear of ignition in the case of a random spark? Or is it only us hose heads that have to worry about such things?

robysue wrote:
Now I don't know about you, but I really think worrying about vasoline igniting in the presence of a spark crosses the line into fear mongering.

Well, if you put your face in a hot oven while eating some twigs, there is a possibility that a spark ...

WiKi - Petroleum jelly is a semi-solid mixture of hydrocarbons, having a melting-point usually within a few degrees of 75°C (167°F). It is only flammable when heated to liquid, then the fumes will light, not the liquid itself, so a wick material like leaves, bark, or small twigs is needed to light petroleum jelly.

When I taught high school biology in the '80s I had the hardest time convincing my students that people can't spontaneously combust. Something they saw on TV . . .

Nothing so dark as a closed mind. There might be some pathology involved, too.

I recall reading an interview with the Austrailian gent who invented the CPAP in which he said, in response to a question, something like, "The only way someone can be harmed by a CPAP machine is if someone hits them over the head with the G-D thing."

I guess blowing up balloons can also burst your lungs. Never thought about it.

If you set your pressure too high, your eyes will pop out!

There are two issues in this thread.
1. Controlling our own treatment, and
2. Tolerance for differing opinions.

Regarding #1, my pulmonologist was just fine with my optimizing my apap pressure range (I think that the great AHIs in the encore graphs I showed him were persuasive). In fact, when he wrote a script for a new machine, he used the range that I had derived empirically. I have optimized my therapy by refining my pressure range more precisely than can be done in a sleep study. I don't recommend this for everyone, a patient must be willing to make careful observations, tiny adjustments over longer periods of time, and realize that there are many factors (leaks, humidity adjustments, ramps, and many others) not just pressure ranges that affect success, and that too much pressure has consequences.

Regarding # 2, contrary opinions are good things that force every thinking person to double-check his or her own conclusions and beliefs.

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Captain_Midnight wrote:Regarding # 2, contrary opinions are good things that force every thinking person to double-check his or her own conclusions and beliefs.

Opinions are one thing.

Misinformation stated as fact is something else.

Slartybartfast wrote: I recall reading an interview with the Austrailian gent who invented the CPAP in which he said, in response to a question, something like, "The only way someone can be harmed by a CPAP machine is if someone hits them over the head with the G-D thing."

Let's not incorrectly attribute that kind of language to the gentlemanly Dr. Colin Sullivan who is given credit for inventing CPAP.

The quote actually comes from one of ResMed's chief executives and I thank him for it.

So Well wrote: The quote actually comes from one of ResMed's chief executives and I thank him for it.

Well, it was somebody who should know. I stand corrected.

Slinky wrote:

My sleep pulmonologist (also a critical doctor) ordered my APAP set 4 cms to 20 cms -

Slinky, I have read here dozens of times that 4 - 20 was patients' prescribed pressure as was mine. So where does Beachie get off saying upping your presssure will harm your lungs?

Welcome to the forum, Beach Girl! I hope you do stay. I hope you don't mind that I share my perspective on this simply as another viewpoint for you to consider. Please keep in mind that I am not your average sleep apnea patient. Great care needs to be taken with me since I have a neuromuscular disease with diaphragm muscle weakness.

My bipap pressures were 14/6. I knew how to adjust them, but never did. When they put me on the ventilator and decided on AVAPS Mode, they set the tidal volume at 600ml, with the maximum inhale pressure set to 30. To the best of my knowledge, no cpap or regular bipap goes that high (but admit I may be wrong on that).

In order to keep my tidal volume at 600 (which we now have determined is WAY too high for me and has been lowered to 400), the ventilator had to push pressure close to maximum. Was it uncomfortable? Oh yeah -- horrible, which is why everything was lowered. But I did endure that maximum pressure for about 5 nights before we lowered it to where it is now.

I don't believe I was in any danger other than being uncomfortable. I think if it were dangerous, my doctor never would have allowed the machine to be set to allow an inhale pressure of 30.

My personal opinion is that the average cpap/bipap patient isn't going to harm themselves by adjusting their pressure. If I can handle a pressure of almost 30 and not suffer permanent consequences....well I think it speaks for itself.

sleepyprm wrote:I was in Orlando recently and my CPAP machine was stolen from my rental car - obviously they didn't know what they were stealing, they just reached in an grabbed whatever they could get quickly - and that's not the point of my post.... I found a DME, Colonial Medical, in Orlando, and rented a machine for the week. I always carry my prescription with me. Even though the pressure was listed on the script, the rep asked me what pressure I use. I said, "The prescription is written for 6.0 but I moved it up to 6.5." He turned around and said, "You know how to set your own pressure?" I said yes. For a minute I thought he was going to make me get mean with him. But instead he said, "Everyone should know how to do that."

Just a nice thing in the midst of stress and chaos. I did have to spend a night without my CPAP, as the DME wasn't open when the machine was stolen. It was an awful night, but just dealing with a DME who realized that we are adults helped quell the stress of re-constructing my life that day (my laptop was also stolen, and all my prescription meds as well, while I was in a Walgreens for 10 minutes on the way from the airport to the hotel).

Just wanted to get a good comment out there, if you ever need a good DME in Orlando, I recomment Colonial Medical.

Sleepyprm, Just a quick question - did you bring your prescription with you like Gumby has suggested in the past or how did you handle getting it? Your plight illustrates that one can never plan for everything when traveling.

I guess I need to add to my suggestion not to pack your prescription in your cpap bag but to keep it separate. I am sure future readers just won't believe that something like this could possibly happen.

Hey, you don't suppose it was the "cpap Police" taking your equipment back because you raised your pressure from 6cm to 6.5cm do ya? You are living on the edge these days eh? Could they have been following you all this time?

BeachGirl wrote:feel free to search on Google. There is plenty of information concerning this.

I looked and I couldn't find any citations for lung damage in adults that is significantly (or even marginally) attributable to CPAP use.

Cheers,

Bill

billbolton wrote:

BeachGirl wrote:feel free to search on Google. There is plenty of information concerning this.

I looked and I couldn't find any citations for lung damage in adults that is significantly (or even marginally) attributable to CPAP use.

Cheers,

Bill

You can find how to change the pressure of any machine on the market if you Google it. So feel FREE to search that.

--and you can find anything on the internet; but it is foolish indeed to fail to consider the source.
Usually controversial subjects have citations on both sides; many were likely planted by proponents of a particular view.
It doesn't make it right; but if it impacts someone health; it is morally wrong.

robysue wrote:Rested Gal,

... to why one shouldn't use vasoline with CPAP masks:

any other kind of oil based lubricant will break down your mask and in the event of a spark can ignite.

That's sad, The nurse setting up my dad's home health cited the same warning concerning oxygen use. Of couse the nurse couldn't explain it when I asked. It's just included in the warnings so the sheep recite as they are told.