From Vent to Diaphragmatic Pacing System (DPS)...

[trainman]

The pause is not the same as the vent. On the vent, especially without a PMV, you would pause speech during the time between breaths. Since air is required to speak, you can't talk without it. Therefore, a low BPM means longer pauses. When breathing via DPS though, it's the opposite.

When my diaphragm is stimulated, I breath in just like every other "breathing" person. However, when getting air through this method, it is physically impossible to speak. I confirmed this by asking other "breathers" around me and through conversations with those in respiratory lines of work. So, when on the DPS, I speak between breaths, not while breathing in.

Remembering back to grade school music class, my teacher would tell my classmates (I used the vent 24/7 then) to stagger their breathing on long notes. They would sing the note for as long as they had air in their lungs and then pause to breathe in. That works as long as your head is connected to your diaphragm via the spinal cord, you can breathe in when needed.

My DPS is set to 15 BPM, the same as my vents were. Therefore, I breathe in, read as need to pause, every four seconds. If I was on a setting of say 10 BPM, then I would take a breathe every six seconds. As Bill pointed out though, you also need to maintain good O2 sats by receiving enough air often enough.

It's a fine line between getting the proper amount of air and being able to speak well enough for your needs. Sometime this summer I am planning to return to Chicago for a check-up and to "play" with my settings. Increasing the stimulation means I take in a deeper breath and may be able to longer between breaths. That will be easier to test when the technicians are right beside me and can make immediate changes rather than shipping a unit in and receiving it a few days later with a minor change.

[nancygail]

interesting good info

[LindaT]

Hey Bill and all, Thanks for asking about the chest X-Ray. After some confusion at the clinic he was able to get it today.
I saw the X-Rays, and while I am no expert it is obvious one of the lower left lobes is just not showing. One side looks good, the other is only the top.
Our doc will try to find a pulmonologist to take a look and see what is happening-this will be a challenge.
When it as the same a few weeks ago they were puzzled if is atrophied or what.
Dave was really discouraged. Since he has been able to ear the cap and PMV.had a decent voice the last couple days I told him he is doing pretty darn good.
Damn lower lobe.

[Scaper1]

Does Dave take any kind of bronchial dilator, like Ventolin?

[LindaT]

Originally Posted by Scaper1

Does Dave take any kind of bronchial dilator, like Ventolin?

I'm embarrassed to say I am not sure what that is.
He does use Albuterol with a nebulizer (compressor?) a few times a day.
We call it smoking the peace pipe.
He has had less secretions the last few days-it is all so confusing.

[Scaper1]

Same stuff. Fancy word for expanding airways.

Does it help?

[LindaT]

Originally Posted by Scaper1

Same stuff. Fancy word for expanding airways.

Does it help?

Thanks Scaper-yes, it definitely helps. He uses it a few times a day.

[Scaper1]

So is this the unofficial pacer thread? I have a question for other pacer users please.

Do you ever get abdominal discomfort to the point where you feel like the pacer isn't working properly? Every now and then I get intense neuro pain from down near my left pacer, and what feels like a strong build-up of pressure along my entire abdomen. It gets bad enough to interfere with my breathing, leaving me feeling short of breath and extremely uncomfortable, especially while flat. Usually it eases off, but my latest bout is kind of scaring me.

[trainman]

I experienced a few periods of shallow and deep breaths in the beginning, but not what you're describing. Mine was likely the diaphragm getting fatigue, I wouldn't have a guess for you.

[nancygail]

I had my pacer placed this Monday at GOOD SAM in Portland.I'm very happy with the results so far.Even though I am starting at a very low level of stim i am able to go off the vent with less effort.I plan to return to the clinic on Tues Sept 6th to have my stim levels turned up.

The surgeon said my diaphragm was in good shape and that he was able to get an excellent contraction.Even though it was deconditioned from 28 years of disuse.

I want to thank "TRAINMAN", Bill and Jeff from synapse for their help and advice.

I'll post more details soon............