Post-transplant day 100; rehab #50. Taking stock.
I don't have any deep thoughts today. I've just been ruminating over where I've been these last 100 days and how far I have yet to go. It is an amazing coincidence that my email started filling up again with subway service alerts today. I had turned these off exactly six months ago; shortly before moving to Durham. I'd figured six months should be more than enough.
Well, it was enough to get listed and transplanted and even recover to - what? about 85% functional status. But it hasn't been long enough to get me OUT OF DURHAM. And that is the sore point in all of this. There were a lot of things that could have been done differently and I could have been gone by now, or at least been packing up this next week. (I acknowledge that getting sick right in the middle of a clinic visit is almost certainly going to set anybody's going-home timetable back.) But I surely thought that by 100 days post-transplant, I'd be home again.
I'll admit this setback has affected me more than it probably should have. I feel marginally better after a long conversation wtih Piper Beatty today, who once again saves my sanity by showing me that what I'm experiencing is well-trodden transplant territory. These last 100 days - hell this whole last couple of years - has been made so much easier for having her counsel. I can't imagine how people go through this alone and without the benefit of an experienced guide.
What I've accomplished in 100 days is reasonable. Not everybody is able to jog, ride a bicycle, and do pull-ups and push-ups after 100 days. Mostly, we still feel like hell, even if its a better hell than the first days and weeks right after our surgery. What I HAVEN'T accomplished in 100 days weighs on my mind. I still can't jog a continuous mile, haven't returned home, can't lift what I could pre-transplant. Walking any distance still involves a new kind of effort (though once I get going, I can go quite a long time). People will tell me I should be satisfied with my progress so far; but if satisfaction with myself were in my nature, I wouldn't have achieved what modest marks I have at this point. I'm always pushing. Now, I never thought I'd be at 100% by 100 days, but I guess I thought I'd be a little further along than I am.
The past 100 days, though, has been primarily filled with pondering the source of my lungs - my donor and savior, that wonderful anonymous soul. What must his family be going through? Soon, at the 6-month mark, I will write a letter to my donor's family; a letter of thanks and of pride. I hope to be able to tell them they can be proud of their loved one, for having passed on beautiful lungs and that they can be proud of the recipient, for having used this gift to its maximum potential. I want to be able to write of wonderful adventures, such as the upcoming 5 Boro Tour and the Long Reach Long Rider's annual ride. I'll write of surviving a horrible disease and of recovering swiftly after transplant. And I'll write of finding a girlfriend, returning home, returning to work, and trying to live a life for two.
What will the next 100 days bring? I'll make plans, but I'll make no bets. Life is too strange and unpredictable right now. But I hope the next 100 is even better. Today I am reminded that transplant patients don't set the timetable, that patience is a virtue, and that any 100 days now is 100 more days than I had on the clock.