March 12, 2014

Recovery, phase two

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.

My 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.

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