Yesterday I attended another transplant seminar. There was very little information in it that was new to me, though there were a few tidbits. I don't think the first speaker, one of the post-tx nurses, was very into it, but the PA who followed her was very lively! I remember him from before. (I can't conjure his name at the moment, sorry.) He's the one who shows off the teddy bear and how you hug it to cough immediately after the surgery.
Anyway, as enthusiastic as he was, I felt very sober in this meeting. The morning before, I had been skimming through Facebook and saw a post by a CF friend that one of her CF friends, Savannah Wood, had passed away. I followed the profile link. There wasn't much on her wall, but there was enough to construct a story from. She'd been transplanted in September of last year and was apparently doing pretty good, but had chronic rejection - and that ultimately got her.
We talked about rejection at the seminar. Mostly, the professionals reviewed what the grades and kinds of rejection are and what biopsy results mean. (An A0, B0 is great.) They discussed what steps can be taken to treat rejection. But they didn't mention that some rejection doesn't respond. They didn't explicitly put it out there that sometimes, rejection gets the upper hand and you die. (One could argue that given enough time, this is true in 100% of transplant cases, perhaps.)
At the same time, I was also thinking about my friend Jerry Cahill, who at this very moment is lying on the transplant floor, having gotten the call Thursday. I presume he's doing well, as he is sporadically updating his Facebook. Now Jerry and I are no longer in the same boat. He's moved on to the next boat. Still tricky, still many medical problems - perhaps more.
The PA put up a picture of another recently transplanted patient on the screen, or at least that guy's incision. This, too, brought to mind Savannah, as one of the pictures still on her wall is of her incision and chest tube holes perhaps two weeks post-tx, replete with several dozen staples (88? like a baseball?) and freshly sutured chest tube wounds.
It's all very sobering. This is going to actually happen! Theory will, at some unspecified point in the future, become reality. And most sobering is my knowledge that not all things end well for the patient. I cannot forget Richard, who passed away about six years ago and whose funeral I attended in Oklahoma. He got transplanted, but never left the hospital. To be sure, there are many among my network who have done exceedingly well post-tx, such as Piper Beatty. I pin my hopes on those success stories; but I am a realist.
Don't misunderstand me; I'm not afraid. But the timing is crucial. The doctors know that; I know that. But chance, god, fate - whatever you want to call it - does not know that.
Goodbye, Savannah; you are missed. Breathe easy. Good luck, Jerry; I'm hoping you'll be the textbook-perfect case. Because I need that good example.
The chronicles of a man with cystic fibrosis just trying to live a good life.
April 26, 2012
April 7, 2012
One Finisher (Scotland Run 2012)
It was a beautiful morning for a run. Though I had lingering doubts about the wisdom of going out for a 10K after months of running no more than 2.5 miles, and zero runs under my belt since early February, I forced myself to go. My trepidations also stemmed in part from knowing the last time I'd run in Central Park at all was Boomer's Run to Breathe last July 9! How can so much time pass so fast? Well, I'm glad I did today's race - as one popular internet meme goes:
I ran this race because I had good impressions from the last time I ran it, which turns out to be 2007! I ran a 1:12 in that race, which I knew to be better than I could do today, being a little more lung-damaged and a whole lot more untrained. The race is fun because people really get into the spirit of celebrating Scotland. They were kilts, tartan sashes, hats, shorts - anything really - and there's the Scottish flag splashed everywhere, especially in face painting. The Scottish sponsors provided really nice swag this time, including a muslin shopping bag and a stocking cap that'll be perfect for next winter.
I didn't warm up other than some brief calisthenics - I needed to save my energy for the race. I hung out beside the pink corral and slipped into the stream of runners when the brown bibs started outnumbering other colors. Why walk a half mile back when I can save the effort and my legs? I'd fueled poorly the night before ( --- and a big FUCK YOU to National Grid, btw, for turning my gas off unannounced over an ID issue --- ) and didn't fuel great in the morning. I did remember to bring powersnot and Endurolytes; both of which I feel definitely helped me get through this race sans cramps.
The race started right on time and I crossed the start line 7 and a half minutes into the race. I kept mental track of my splits as I went and pumped out the first three miles in roughly 12:30s - and that included the worst hills. I was ok with that. But lack of training became clear in mile four, where my time went over 13 minutes and then especially in five and six, which had to have been approaching 14 minutes per mile. As in other races, I was not thrilled with the marathon-identical uphill finish. But whatever.
One thing occupied my thoughts much of the run: the announcer at the start had mentioned there were 15000 entrants and "how many finishers will there be??" One, I thought. For each person out there, the run itself is an individual effort. Each of them will say "I finished". Probably not "we finished" (OK, maybe a few couples and teams). But with every non-relay race and every runner at every level, there is only one finisher: I.
And yes, I finished. I did so in reasonably good shape in 1:19:55, managing a per-mile average of 12:52. Very slightly better than my last two NYRR races and certainly better than some of the miserable death marches of the past. It gives me hope that with some actual training, I might get down to a 12 minute mile for the next Boomer run. And perhaps then I won't suffer the pain of today for having gone too far on too little training. Though, to be honest, I've finished in worse physical shape even when better trained.
I ran this race because I had good impressions from the last time I ran it, which turns out to be 2007! I ran a 1:12 in that race, which I knew to be better than I could do today, being a little more lung-damaged and a whole lot more untrained. The race is fun because people really get into the spirit of celebrating Scotland. They were kilts, tartan sashes, hats, shorts - anything really - and there's the Scottish flag splashed everywhere, especially in face painting. The Scottish sponsors provided really nice swag this time, including a muslin shopping bag and a stocking cap that'll be perfect for next winter.
I didn't warm up other than some brief calisthenics - I needed to save my energy for the race. I hung out beside the pink corral and slipped into the stream of runners when the brown bibs started outnumbering other colors. Why walk a half mile back when I can save the effort and my legs? I'd fueled poorly the night before ( --- and a big FUCK YOU to National Grid, btw, for turning my gas off unannounced over an ID issue --- ) and didn't fuel great in the morning. I did remember to bring powersnot and Endurolytes; both of which I feel definitely helped me get through this race sans cramps.
The race started right on time and I crossed the start line 7 and a half minutes into the race. I kept mental track of my splits as I went and pumped out the first three miles in roughly 12:30s - and that included the worst hills. I was ok with that. But lack of training became clear in mile four, where my time went over 13 minutes and then especially in five and six, which had to have been approaching 14 minutes per mile. As in other races, I was not thrilled with the marathon-identical uphill finish. But whatever.
One thing occupied my thoughts much of the run: the announcer at the start had mentioned there were 15000 entrants and "how many finishers will there be??" One, I thought. For each person out there, the run itself is an individual effort. Each of them will say "I finished". Probably not "we finished" (OK, maybe a few couples and teams). But with every non-relay race and every runner at every level, there is only one finisher: I.
And yes, I finished. I did so in reasonably good shape in 1:19:55, managing a per-mile average of 12:52. Very slightly better than my last two NYRR races and certainly better than some of the miserable death marches of the past. It gives me hope that with some actual training, I might get down to a 12 minute mile for the next Boomer run. And perhaps then I won't suffer the pain of today for having gone too far on too little training. Though, to be honest, I've finished in worse physical shape even when better trained.
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