Ventilator Downloads - Input Requested Pls.

[robysue]

It's too bad that the machine won't allow the Ramp to start any higher than the EPAP (can we say 'stupid'???). If I could leave the EPAP around 8, but get the Ramp to start around 12-13 and gradually Ramp up to 17, it just might work. But no, this machine won't allow me to do that.

As far as I know...

I don't think any bilevel machine will allow a Ramp start pressure to be set higher than EPAP (the lower of the two pressure settings...EPAP/IPAP.)

Likewise with autopaps -- I don't think a Ramp start pressure can be set higher than the minimum pressure setting in the min/max pressures range.

I don't know about the Resmed VPAPs, but on the PR System One BiPAPs, the way the ramp works is this:

• Starting Ramp EPAP can be set anywhere between 4cm and strictly LOWER than the EPAP (in standard Bi-level mode) or min EPAP (in Auto BiPAP mode), and
• Starting Ramp IPAP = Starting Ramp EPAP + 2cm in all cases

So on the PR System One, there's always at least of 2cm difference between IPAP and EPAP even during the ramp period.

But alas, for some silly reason, the Trilogy doesn't seem to be set up in the same way even though it is a Resprionics machine, at least as near as I can tell from what Maddie says about the ramp. So to Maddie, when your starting ramp EPAP is set to 9cm, are you sure the starting ramp IPAP is also set at 9cm? Or might IPAP start at 11cm? Maybe you could check this during the daytime by watching the actual pressures when you first mask up and turn the ramp on?

[Madalot]

So to Maddie, when your starting ramp EPAP is set to 9cm, are you sure the starting ramp IPAP is also set at 9cm? Or might IPAP start at 11cm? Maybe you could check this during the daytime by watching the actual pressures when you first mask up and turn the ramp on?

I will do this. My kids are leaving for a movie in 30 minutes (thank goodness) and I can look at this.

Assuming that starting ramp IPAP = EPAP+2 (meaning my epap is 9 so hopefully the starting ipap would be 11) and I'm trying to ramp up to 17, what would you consider a reasonable ramp time? I used 20 minutes last night.

[Madalot]

Thanks, robysue -- you are correct. I didn't notice it last night, but the starting ipap with the ramp is epap+2. So, I have the epap set at 9, so the starting ipap is around 11. Still VERY low for me, but better than 9 or 10.

Since I feel SO bad at epap of 10, I will leave it at 9 tonight and try the ramp again. Maybe this will be a bit more tolerable...

Actually I feel so awful today, I may try a nap (on the sofa) and see how it goes...

Thanks...

[SleepingWithUgly]

http://en.wikipedia.org/wiki/M%C3%BCnchausen_syndrome

[JohnBFisher]

Interesting, we have someone pretending to be SleepingUgly (using similar avatars and names), who has posted just 6 times (including above) and has the hubris to claim that Madalot suffers a psychological disorder.

Let me be VERY clear. I condemn the actions of such a ... thing, who believes it knows better than one who lives with a chronic illness. Let's be clear about this:

• We have someone who pretends to be someone else.
• We have someone without the courage to post as themselves.
• We have someone passing critical judgement on another.
• We have someone who does not contribute to the conversation, but trolls the waters.
• We have someone who tries to get SleepingUgly embroiled in this.
• We have someone how tries to sow dissent.

If we are talking about personality disorders, this poster clearly qualifies as someone who needs serious help.

As someone, who struggles with a disorder that will dramatically shorten my life, I do understand what this attack means.

Madalot, please know that your struggles are understood as your effort to stand in the face of a horrible situation. Thank you for your courage. Thank you for sharing your experience. We all grow and benefit from your experience. You provide a good example. Thank you.

[LoQ]

http://en.wikipedia.org/wiki/M%C3%BCnchausen_syndrome

Never a dull moment.

[snuginarug]

If we are talking about personality disorders, this poster clearly qualifies as someone who needs serious help.

Indeed. Nail on the head once again, John. Thank you.

[LoQ]

...

SU, can't you keep him in line?

[StillAnotherGuess]

• We have someone who pretends to be someone else.
• We have someone without the courage to post as themselves.
• We have someone passing critical judgement on another.
• We have someone who does not contribute to the conversation, but trolls the waters.
• We have someone how tries to sow dissent.

If we are talking about personality disorders, this poster clearly qualifies as someone who needs serious help.

You are making me nervous here.

We have someone who tries to get SleepingUgly embroiled in this.

SWU may still be waiting for SU to bring the ham 'n cheese?

[Guest]

Interesting, we have someone pretending to be SleepingUgly (using similar avatars and names),

Is the poster pretending to be SleepingUgly, or Sleeping WITH Ugly? Is anyone fooled into thinking this is really SleepingUgly?

[BleepingBeauty]

Interesting, we have someone pretending to be SleepingUgly (using similar avatars and names),

Is the poster pretending to be SleepingUgly, or Sleeping WITH Ugly? Is anyone fooled into thinking this is really SleepingUgly?

Doubtful. We may be tired, but we're not stupid.

Just another jackass...

[SleepingUgly]

Wow, I go out to see X-Men and this is what I come back to?!

SU, can't you keep him in line?

No, so that pretty much proves that he's NOT Sleeping With Ugly, doesn't it?

[Madalot]

I had woken up from a nap (laying on the couch) and glanced at the thread. I did NOT look at the avatar and only glanced at the post. My first thought was "SU has given me a wikilink to look up ipap starting pressures on Respironics" but saw there were other posts and scrolled down. John's post made me do a double take so I went back up and looked --

I laughed and said out loud "Idiot Syndrome" to which my husband did give me a look like I was off my rocker. Then I didn't worry any more about it.

Even though I have MD (not MS but can't find my documentation that quickly explains the difference between the two diseases) -- the "spoon" explanation by a woman with MS works for me and my situation --
I cannot spare any of my precious spoons on the stupidity of SWU or Guest (I personally think they are the same) or anyone else that tries to come after me this way. But if it gives them some sense of satisfaction or self worth, I can do an eyeroll over it. As a matter of fact, I may have actually been able to retrieve a spoon with a bit of real laughter.

[Madalot]

And now we return to our regular programming....

Since robysue pointed out to me that the ramp starting ipap is actually epap+2 (thanks again for that), I decided to try last night - I increased the minimum ipap to 17, but used the Ramp.

I don't like the starting ipap at 11, but it goes up quickly and I dealt with it okay. The ipap of 17 is probably okay for me now, but I still woke up a lot, probably when it went beyond that. When I did, I hit the Ramp so that it would lower immediately rather than waiting for the pressure to drop down slowly.

When I can get a ventilator download, I'll look at last night and see what it looks like. I'll download from my pulse ox monitor later today.

All in all, it wasn't a bad night and I think I'm going to stick with these settings for a few nights and see how I adjust (unless the downloads show a serious problem, which I don't expect).

[Madalot]

When I can get a ventilator download, I'll look at last night and see what it looks like. I'll download from my pulse ox monitor later today.

I wish I was smarter and more educated about all of this because I am so confused now...

The information from Friday night (epap at 10, using the Ramp) vs Saturday night (epap at 9, using the Ramp) --

The downloads from Friday night LOOK better on paper than Saturday night, but I had significant trouble breathing at epap 10 and felt much worse on Saturday.

Ugh. Now I really don't know what to do.