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.