Ventilator Behavior -- Any Ideas? Me or the Vent?

The situation with the ventilator is no longer amusing. My other thread told of it, but here it is again in a nutshell. I'm hoping that somebody with some knowledge will give an opinion -- I'd like a little input as to what might be going on.

I've woken up in recent weeks feeling like the ventilator is pushing high pressure at me. Before the other night, it always reduced down after a minute or so, thus I figured it had responded to an event of some kind, woke me up and fixed it and everything was as it should be. Fine.

Thursday night (early Friday morning) I woke up and that thing was pushing maximum pressure at me in pulses every second. Very unnerving. It didn't stop. So I turned the screen saver off and saw it -- it was pushing pressure of 23 constantly, but the dot next to the pressure bar kept flashing (the dot is supposed to mean patient initiated breath). I sat up and it just didn't stop. I finally turned the machine off, went to the bathroom and turned it back on. It was fine.

It did the high pressure thing again Saturday morning around 8am. It wasn't as severe as the previous night, but it still was pushing maximum pressure well after I woke up and was breathing on my own (to the best of my knowledge). It was late enough that I just got up.

This morning (Sunday morning), the darn thing did it again around 5am. More like Saturday -- the high pressure, possibly responding to an event of some kind, but it keeps doing it after I wake up. I tried holding my breath to see what it would do and it did the same thing it did Thursday night -- high pressure at fast pulses. So I inhaled and it was still giving me the high pressure again, just not the fast pulses of it.

Anybody have any idea what could be happening? Any input would be appreciated. I need to know if this is a problem with ME or the VENTILATOR.

Madalot wrote:. . . I need to know if this is a problem with ME or the VENTILATOR. . . .

It is my personal (NON-professional, UN-trained, NON-medical) opinion that it isn't a matter of it being a problem either with you or with the vent, in some mutually-exclusive sort if way.

My understanding is that the point of a vent is for it to be matched to your particular, individual breathing needs. It is my opinion that for that to happen in your case, a well-trained RT would need to watch you sleep while you used it in order to see exactly what is happening. Anything else would be trial-and-error guesswork, and some things just aren't worth the "error" risk.

But that is only one man's take (mine) on the situation--and a take that you may, understandably, well be tired of hearing from me.

jnk wrote:

Madalot wrote:. . . I need to know if this is a problem with ME or the VENTILATOR. . . .

It is my personal (NON-professional, UN-trained, NON-medical) opinion that it isn't a matter of it being a problem either with you or with the vent, in some mutually-exclusive sort if way.

My understanding is that the point of a vent is for it to be matched to your particular, individual breathing needs. It is my opinion that for that to happen in your case, a well-trained RT would need to watch you sleep while you used it in order to see exactly what is happening. Anything else would be trial-and-error guesswork, and some things just aren't worth the "error" risk.

But that is only one man's take (mine) on the situation--and a take that you may, understandably, well be tired of hearing from me.

First and foremost -- I am NOT tired of hearing from you at all. Far from it. I appreciate any and all input.

Anyone that wants to give an idea -- I welcome it. Sometimes an idea out of the blue can spark more ideas that ultimately solve the problem. Anything that is posed here will be discussed with the DME, RT and doctor. I promise.

What you said is pretty much what I told my husband last night. I have a feeling they're going to say that I need to do another sleep study on the ventilator to be certain about anything. :::sigh::: But I'm afraid it's going to be that or I won't have any answers.

This has been happening, but until the other night, the vent stopped and went back to normal IPAP/EPAP after a minute or so. It's not doing that now -- or at least not very quickly.

Thanks for that input, JNK. I really do appreciate it.

Hey, Madalot, have you got a video camera that allows you to film yourself and the machine's LED? Maybe that might help in diagnosing what's going on...sure swounds uncomfortable.

Muse-Inc wrote:Hey, Madalot, have you got a video camera that allows you to film yourself and the machine's LED? Maybe that might help in diagnosing what's going on...sure swounds uncomfortable.

No, but that might be an avenue to think about.

Before I went on the ventilator, I was on the cpap/bipaps at a maximum pressure of 14 (which is now my MINIMUM IPAP). While it didn't bother me to have a constant pressure of 14 delivered, my overnight pulse ox tests showed that I was desaturating badly, leaving them to conclude that I could not exhale against a constant onslaught of 14.

Now this thing is giving me a constant 23 without letting up enough for me to breathe much. But -- it's only doing it once a night (that I know of).

Well, I guess I'll have to see what my DME says tomorrow.

Yesterday, I had a "thought" about maybe the mask being a problem. An investigation into the mask DID reveal a problem --my mask was broken!! I can't believe that I never noticed that part of the mask had broken and that could have been responsible for leaks, thus making the ventilator behave the way it was.

We replaced the mask with a new one, having high hopes that the problem would be resolved. Unfortunately, the ventilator persisted in it's strangeness last night, despite the new mask. It was bad enough again last night that I had to get up and turn everything off for a few minutes. I turned everything back on, just like Thursday night, and it was fine the rest of the night.

I will be on the phone in about an hour or so -- last night's incident just about put me in tears. This is just nuts.