What can be.

Post-transplant day 98, rehab #48.

Though I had to drag myself to rehab today (insomnia and pain still affecting my sleep you know), it turned out to be a good day.  First of all, it felt good to be able to share the news of Andrea and Ellie's transplants among our rehab friends.  [The rehab staff already knew, as tends to happen on Tuesdays because the they send representatives to the weekly transplant team meeting where every patient's progress is reviewed.]

Secondly, I notched some small marks of progress.  On the treadmill, I was able to put in a jog interval of a full three minutes!  I followed that by more intervals, totaling eight minutes of jogging, 12 of walking.  My goal before sinus surgery is to get in a 5-minute jog interval and get the jog/walk ratio to 50:50 or better.  Anyway, believe me that after a year of no running and then a major surgery, three solid minutes at six miles an hour is a victory. 

I also decided to continue something I tried on my last "arms" day: pull-ups.  The first time I did this, nobody but Kyle noticed and that was probably a good thing.  This time, though I had the unsolicited attention of several patients and a couple of the therapists.  I managed five pullups and it was generally met with approval.  This will probably be the feat that gets my ass booted out of rehab and put over in CFL.  We'll see.

But I hope not because of what happened at the end of the day.

After 5:15, the place quickly becomes a ghost-town.  As I was packing up, there were only two or three of us patients left and all the therapists had disappeared into the office, leaving the exercise floor a towel-strewn desert baking under the noonday glare of 3200K fluorescents, with only ghosts occupying the floormats and the arms of the weight machines jutting up like steel saguaro.

As a chill breeze whistled through, carrying the lonesome notes of some downbeat iTunes radio station, I was stopped by the other patient who was still there packing up.  He is not eligible for a transplant, but is there trying to keep what's left of his lungs (after several cancer surgeries) strong.  He does a good job!  He confirmed with me that I'd already had transplant and then thanked me for still being here.  I said I'm surprised they haven't sent me over to CFL yet, but am more than happy to continue working out at the ideal gym.  He said he liked having me around because it's highly motivational to everybody else.  He said he noticed people work harder when I'm around.  He said he hopes I stick around at rehab until I leave for New York because I'm good for the general atmosphere; I set a mark to strive for; I show what CAN BE.

I really needed to hear that.  I constantly have my doubts about whether I should be exercising there.  I hope to be able to lead by example, but I have very little proof that my presence has any positive impact at all.  I'm afraid I'm seen as a showoff by some of the patients simply by performing at the level I do (which is honestly NOTHING compared to my real athlete friends!); and I don't want to fall into the trap of performing so well as to demoralize them.  But today I was reminded - unsolicited - that all I have to do is continue to do what I do, and that will be enough to inspire those who want to be inspired and motivate those who want to be motivated.  The therapists don't need to crack a whip, nor beg and plead, nor cajole, nor patronize - they just need to keep one or two patients like me around - patients who inspire just by coming out and doing the rehab with 100% effort and a smile on our face and showing what can be.

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.