Ventilator Downloads - Input Requested Pls.

[Madalot]

I guess I was referring to a "straight ventilator" as opposed to an "auto ventilator", whatever that would mean. I'm just concerned that the varying of your pressure is an issue for you. There are some people on "regular" cpap who do better on straight cpap and others who do better on auto cpap. I thought the same might be true for you on your ventilator. (I'm pretty clueless when it comes to ventilators, so take that with a grain of salt.)

I understand and believe me, I really appreciate everyone that pipes in with ideas. If the words I write seem ungrateful or irritated, please know that's not my intent at all. I like the idea of trying this as a straight ventilator rather than automatic, but that's where it gets a bit dicey, in my mind anyway. I need a certain amount of inhale pressure to be able to breathe easily and comfortably (around 14 is good). But during the night, the auto aspect of this bumps the pressure up as high as we will let it go, supposedly because something is wrong that I need that high of a pressure. But -- it wakes me up. I tried starting at the higher pressure, but it is too high for me to fall asleep. So, we tried the Ramp, and I dealt with having to start at a LOWER pressure than is comfortable, but even using the Ramp, trying to gently get up to 17, I was still waking up.

Maybe I SHOULD go ahead and set the maximum around 15 or 16 and see what happens, knowing that it's possible those pressure settings will NOT be able to maintain my tidal volume. Luckily, since I have regular access to my data now, I can monitor that and know the next day if there were serious problems.

My regular sleep doctor is actually a neurologist. I see nothing wrong with seeing a neurologist as well as a pulmonologist. At this point, I would say a fresh set of eyes would be a good thing. It can't hurt anything, that's for sure.

I agree here. I am going to make a call to my REGULAR neurologist's office and ask if the Fellow (who is now gone) made the referral or if he forgot. I'm betting he forgot so I've been sitting here waiting for almost two weeks. Hard to say.

But again -- I do thank all of you for the ideas and appreciate them.

[Madalot]

I'm keeping all of this in the same thread to make it easier...I hope.

I've been thinking about all this crap and a thought occurred to me. Because I'm using AVAPS (and without it, I tend to feel worse the next day), the machine was reaching the maximum ipap a lot, supposedly to maintain the set tidal volume (400). I lowered the maximum ipap to 18 the other night and while the machine reached 18 each night, the download looked virtually the same. This made me ask -- "if 18 is high enough to maintain everything appropriately, why would the machine go higher -- just because it can?"

So, as a test, I set the maximum last night to 16 -- the downloads look the same EXCEPT the average tidal volume dropped from around 400 to 374.

I am going to post the reports and I wrote in the averages in pen since the right side is cut off for me (and some others) and that's where the averages are listed.

I'm interested in input from anyone that is more knowledgeable and smarter than I am as to how bad this is. Aside from the tidal volume, I don't see anything that's any worse than when I had the maximum ipap at 18 or 23.







To make this easier to compare the averages, I went back and looked at previous days and here are the averages based on other settings. The first column is with the max ipap at 23, the second is at 18 (and the downloads above are at 16). All of them are with min ipap around 13-14 and epap is 9.

Breaths Per Minute 13.07 13.02
IPAP/EPAP 17.07/8.96 16.31/8.96
Leak 39.35 38.18
Minute Ventilation 5.59 5.41
Patient Triggered Breaths 99.64 99.39
Peak Flow 29.38 27.32
Ti/Tot (%) 25.31 25.15
Vte 418.41 408.47

[HoseCrusher]

I think you are on to something.

Your oximetry data looks good, and if I had to venture a guess it looks like you had the opportunity for 3 REM cycles.

Do you feel a little more rested?

[Guest]

So, as a test, I set the maximum last night to 16 -- the downloads look the same EXCEPT the average tidal volume dropped from around 400 to 374.

The suggestion to lower the maximum was made to you a month ago. Everyone chimed in saying it was a good idea, even you. And you are just NOW getting around to trying it? And pretending like it is your own idea? What's the deal?

[Madalot]

I think you are on to something.

Your oximetry data looks good, and if I had to venture a guess it looks like you had the opportunity for 3 REM cycles.

Do you feel a little more rested?

Actually, no. I am sleeping MORE during the day -- I've slept on the couch (with the machine) the last couple days. And I do mean SLEPT -- deep sleep with vivid dreams.

Is the average tidal volume dropping below 400 something to be concerned about? Up until I dropped the maximum ipap to 16 (even though the machine still gets up to 17, but I've been told this is normal) -- my average tidal volume was staying at 400 or above.

AND -- even at max ipap of 16, I still woke up numerous times, resetting the Ramp probably 2/3 of the time (the ramp was reset last night 4 times based on the download).

[HoseCrusher]

My suggestion is to go a few nights with the lower pressure. At the same time, inform your professional medical team what you have done, and that your oximetry data is still looking good, and ask them what a good range of tidal volume for you is.

My "hobby" opinion is that if your oxygen levels are good, you should be close to a balanced condition. However, a "professional" may have another opinion.

Feeling sleepy can go both ways. In one case it could just be your body trying to recover. In the other case it could be that these settings are causing distress.

I have to wonder if waking up every few hours is actual distress, or simply the remnants of doing it for so long. Kind of like a bad habit.

Keep a journal and see if any of this provides pieces to help solve the puzzle.

[Madalot]

My "hobby" opinion is that if your oxygen levels are good, you should be close to a balanced condition. However, a "professional" may have another opinion.

Keep a journal and see if any of this provides pieces to help solve the puzzle.

I think oxygen wise, this looks good. I AM a bit concerned about the drop in tidal volume at 16, so I have contacted my doctor to ask about it. I hope to hear back from her today so I know if SHE thinks it's a significant problem or if she's okay with that level.

When I FIRST started AVAPS, they had me at a tidal volume of 600 with maximum ipap of 30 --- you want to talk about horrible! The RT at that time would only drop everything in miniscule amounts and I was suffering horribly. My doctor finally dropped everything WAY down to where I've been. I'll see what she says about that drop --

I do a "mental" journal trying to solve this, but I know I need to start writing it down. I keep forgetting to do it.