February 24, 2014

The Accidental Exemplar

Post-transplant day 76; pulmonary rehab #37.

I did good today. Not just in a manner of having notched new benchmarks physically*, but also performed a mitzvah. And for once, I'm not going to be humble about it.

[ *I skipped the stationary bike today, instead doing 8 miles on Stoic on the American Tobacco Trail before rehab. That was a pretty nice workout! And then on the treadmill at rehab, using April as a timer, I was able to do jog repeats of a minimum of 90 seconds and one of them finally reached a two-minute span! And I only walked three minute intervals. Yay me.]

Since shortly after transplant I've been experiencing feelings of guilt over the course of my recovery. It's been good; it's been - honestly - relatively easy. Other patients have every reason to be jealous and to accuse me of not actually having had the full transplant experience. I don't know why I haven't had so many problems. I am mindful of the collection of complications, procedures, and extended hospital stays I did NOT have. Without naming names, I have close friends all transplanted here at Duke and within a few weeks of me on either side, who have collectively experienced: uncontrolled bleeding, uncontrollable diarrhea, loss of digits, damage to the heart, strokes, heart attacks, sepsis, failing kidneys, failing liver, paralyzed diaphragm, bowel blockages, subcutaneous air, fluid buildup in the extremities, fluid around the lungs, nausea, uncontrollable pain, G-J tubes, tracheotomies, failed PICC lines, failed ports, clots, ECMO...

I have experienced NONE of that -- yet I dare count myself among the transplanted warriors? I know NOTHING of the true pains of transplant! I know this now.

But today I was put on the spot by the physical therapist teaching this afternoon's education class. It was one I hadn't heard yet, even after a total of 80 previous rehab sessions, so I sat in. She was talking about the importance of being as physically fit as possible for transplant recovery. Duke researchers have statistically linked 6-minute-walk distances pre-transplant to length-of-stay post transplant. The farther you can go, the shorter your hospital stay, in general. And they have a minimum required distance for a reason.

"Now, I don't want to call anybody out in here," she said, "but would anybody post-transplant like to say something about this?" Not QUITE looking at me. I wanted to say "oh, sure, but that's a very general correlation." I certainly know exceptions. People who worked hard in rehab, but ended up hospitalized for a long time; and people who kinda slacked at rehab, but who were out in two weeks. Statistics aren't a promise, I guess.

So I stepped up, played the party line, and explained my case. "Nine days." I let that sink in for a moment. "I spent 44 sessions of rehab before transplant and I worked hard at each and every one of them. My last pre-transplant 6-minute walk was 7 laps. And I was in the hospital only 9 days. I don't know how long I'd have been there if I hadn't built up my strength here in rehab first." I didn't elaborate further, but figured those who want to know more will seek me out.

And they did. I talked with three patient-caregiver couples before they left, providing details, even once explaining how astounded I was when I was asked to stand and walk in ICU - and did!

I hit the restroom before I left and on my way out, the lecturer caught up to me.

"I didn't mean to put you on the spot, but these patients really needed to hear that. From you." She went on. "We're finding more and more that patients complain they don't have enough contact with post-transplant patients - they just need somebody to talk to and they want to hear the positive stories."

Well... patients want to hear - NEED to hear - what's coming, good and bad. Period. It is dishonest not to brace them about the possible and probable complications; it's almost criminal not to give them a precis of typical procedures that often need to be done post-transplant. It's a fucking horrorshow storybook, to be sure. But as I've been told and as I've seen, incoming patients also want - need - to hear how well it can go, as well. That with hard work, careful planning, and good luck a transplant can go by the book. It is possible to recover well and get out in nine days. And come back to rehab and burn up the track.

Today I was reminded that my recovery, while not perfect by any means, has been enough of a shining example that it provides real hope and inspiration to some very sick and desperate people. My feelings of guilt are not going to go away; but if I acknowledge that there's something in my story worth teaching, those feelings are partially neutralized. If just one more patient has a better recovery for using me as an example of how it's done (as I have used Rudy and Jerry), then I'll have gained some worth in this community.

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