Post-tx day 92, pulmonary rehab #44
As of today, I've now spent as many sessions in rehab post-transplant
as I did pre. It was on December 10th that I did my 44th session and
got the call for new lungs. December 10th, my life changed, in some
ways unpredictably so.
One of the things I could not have
predicted is the "stickiness" of the post-transplant weakness, the
debilitation. Some of that I surely
earned, after a year of not running, months of not bicycling, barely
keeping up with a New Yorker's level of walking and stair-climbing (and
beginning to find ways around that too!) Some of the debilitation isn't
earned, but is thrust upon me by the act of transplant itself. I can't
describe well enough to those who haven't been through this just what
this surgery does to you; how quickly you are robbed of your strength in
every limb and wracked with pain in every joint, not just the limbs and
joints operated upon.
These first three months have seen me
make an amazing comeback, by anyone's standards. My lung function is
getting close to normal, I am stronger in rehab than I was before
transplant, and today I was able to sustain 6 mph on the treadmill for
two full minutes (and then repeats of somewhat shorter duration). This
is all good news on the comeback trail.
But I still don't feel like myself.
I was talking to Piper Beatty
about this today and it dawned on me that my friends who have been
through transplant all seemed to really start to blossom AFTER the
three-month mark. No matter how hard or easy their transplant journey,
they seemed to start to recover THEMSELVES only after 90 days had
passed. Not to say there haven't been complications and setbacks, but
it was only in this later period do I start seeing posts from Emily Gorsky
about getting out shopping for the fun of it, taking dance lessons, and
spending a whole lot of time with a boy. It's only in this
post-90-days period that I started seeing posts from Jerry Cahill
about running real distance and pictures where he looked his former
self. And considering he rode a 40-miler with me just 8 months after
his transplant, I think I'm safe in assuming the best is yet to come.
Recovery will happen as it happens. And I'm lucky to be able to even
say that. While I struggle, I struggle ALIVE and that's more than can
be said for some of my compatriots. Yesterday we lost two more CFers,
one of them here at Duke waiting for lungs. I don't know what happened,
but it must have been sudden. Massive hemoptysis, perhaps. I grieve
for Colleen and pour my anger that somehow we let her down into my
efforts at rehab, no matter how strong I do or don't feel.
hospitalization last week and the current antibiotics have left me
feeling weakened again and hollow. But today I was reminded that this
too shall pass - this too MUST pass - and I'll soon be riding and
jogging the streets of New York again, as strong as ever. But I have to
give this process the time it is due.