By now most of you know in theory something about the diaphragmatic pacer that Brooke had implanted April 12, and something about the nature of the laparascopic procedure and why Brooke was such a good candidate for this pacer—and, of course, about the fact that it was the first implantation in Utah of a motor point diaphragm pacer, even though, as has been pointed out, phrenic nerve pacers and other technologies have been in use here for some twenty years. This pacer is a great thing, and Brooke is enormously lucky to get it. But now let’s talk a little about his actual experiences of breathing with the pacer—it’s not exactly what we expected.
For one thing, there was the subconscious and utterly unrealistic expectation that the moment the pacer was plugged in, Brooke would be freed from the vent immediately. Intellectually we knew that wasn’t so, and that the pacer would be serving to strengthen the diaphragm, a longer process. But as always, hopes and desires outrun rational considerations.
The first moments on the pacer, the afternoon after the surgery, were something of a shock—literally, indeed. We could see the abdomen move-- amazingly exciting--when the pacer delivered a tiny current to the electrodes implanted on the underside of each half of the diaphragm. With the initial pacing there’s some expectable pain, felt not just in the diaphragm but also in the shoulders. Brooke joked that it was like being in a prison in Argentina during the reign of the generals; somebody else joked about the technology of tazers. In fact, the shock at its highest setting is no stronger than a carpet shock, said the surgeon from Cleveland, but it isn’t set anywhere near that high now.
I’ve settled into a kind of rhythm, Brooke says, but what surprises me is that it looks like it’s going to be a long time before the diaphragm is strengthened enough so that I can get off the ventilator. I can barely speak through the Passey-Muir speaking valve; I feel like I’m partly starting over, though it’s different from starting with the trach mask. If I relax, I can do 45 minutes without any trouble, but just the same it seems like it’s going to be a long time before the much-anticipated freedom from the ventilator and clearly articulated, normal-volume speaking. It was only in the last session today that I totally relaxed and realized that I could go on beyond the allotted 45 minutes; nevertheless, the verdict is still out about how long this will still take.
No one here knows. The doctor doesn’t know; the head respiratory therapist doesn’t know; we are all in uncharted territory, at least locally (though there’ve been 350 previous implants of this pacer around the globe). Brooke says, I feel as if I’m the center of this uncharted territory in which explorers are tracking around, looking for clues about what will happen, a little like looking for polar bear tracks in the frozen tundra. We’re all in this together, and all we have is the phenomenology of breathing. Everyone here is involved in an experiment. Sure, Dr. Onders tells us it’s all easy, but perhaps we should listen: Onders after all developed this; and he’s the one with the most experience in implanting and using it.
What I think will be most difficult in this whole process is learning how to coordinate my speaking voice with the rhythm of the pacer—that, and eating while on the pacer remain still to be achieved.
Here’s what a session is like. There’s an initial shock in the abdomen, and immediate pain felt in the shoulders, though not severe. Gradually the shocks, the electrical pulses, become almost imperceptible, and soon after the beginning of the session I’m comfortable letting the pacer breathe for me--14 jolts per minute, 14 inhalations and exhalations.
Up to the last session today, however, I’ve been unable to hold back my anxiety, and by halfway through I’ve felt I had to breathe through my mouth—this actually made the experience more exhausting. In any case, in most of the sessions these shocks to the abdomen are hardly felt at all, especially if I’m listening to the Goldberg Variations played on the guitar. This afternoon I was even able to settle into a 40 minute session with almost no anxiety, letting the pacer breathe for me for almost the entire session, and I felt I could have gone on much longer than the 45 minutes currently allotted by the doctor as the maximum I should go at this point. (Ed.’s note: it isn’t that the pacer is breathing for him; it’s that he’s breathing “normally” at a rhythm and intensity set by the pacer.) This is a very hopeful sign, but we’re still all in exploratory mode here.
Now I’m dictating this silently while actually on the pacer. There’s a lot going on: the furniture in my room has been moved around; I’ve just been cathed; I’m getting trach care and the inner cannula changed, and the respiratory therapist has just plugged in the pacer. A pair of OT/PT therapists are on their way here. This is a lot to digest in one moment, but fortunately the Goldberg Variations are playing in the background and I have a new, clearer view out the window. I’ve been looking at a poster made from time-elapse photograph made by my niece; and now I’m really talking while on the pacer for the first time, so I can tell you what it’s like to have all my familiar stuff in the room moved around. It’s taking some pretty deep breaths to get words out—Wow! Wow! Wow! Ah! Progress! Om—but my voice is rather crackly. Does it sound like my regular voice? (not exactly, but getting better by the moment). I can feel a little pain in my shoulders, not more, just the same, not too much, but the talking is the big thing. And just now the phone has run, via skype, and we’re having a phone conversation. At noon Brooke couldn’t talk while on the pacer, but now he can, all the way to Seattle. So here is it from ringside, in real time—another step on the way. It’s the diaphragm, in action.