The Odds

This is the second time a transplant was canceled because of a positive cross-match. My aunt Gigi (whose birthday coincided with the day Jackie heard she was a match) was to donate to me in August of 2002. A week before the surgery we had a positive cross-match. And from what I can tell, the frequency of this kind of calamity is pretty low. So I asked for some numbers.

Julie, my transplant coordinator, checked with the Immunology clinic at the U. They process about 800 of these final cross matches per year, with about 2 positives per year. 2. Out of 800. The odds of this happening twice are 1 in 160,000.

Let’s honor all that with a deep breath and a collective “are. you. fucking. kidding. me.”

This is not the first time I have defied odds. My Mom donated a kidney to me in 2001, the first one. Four months later the donated kidney had developed a neurofibroma, a nerve tumor that needed to be excised, taking the kidney with it. That I know of, that has never happened outside of me. Renal cell carcinoma, the cancer that showed up in my native kidneys a few years ago - totally unrelated to my renal disease - is also exceedingly rare among young people. They also discovered a type ii papillary renal carcinoma (a rare cancer) in that kidney, which is why they took the second. At this point, as you can imagine, I don't put a lot of stock into statistics. 

This was a trauma - I’m recovering from a trauma. I can feel it physically. I could feel it when she told me on the phone. Yesterday I experienced that thing where I woke up and had a moment before I remembered what had happened and my stomach sunk a bit. I’m reeling from it, I’m not sure what to do – I get that there’s no wrong thing when it comes to responding to these things, but there’s no right thing either. I go from feeling angry that this happened to feeling overwhelmed with gratitude to kind of numb.

I’m getting more agnostic about making meaning from these events. My transplant coordinator said that if the transplant had happened earlier, I might still have developed the immunity and had a bad rejection. I don’t know if that’s true. I do know that this whole mess started in the fall of 2013 with pneumonia. I was hospitalized for a week and missed three weeks of work – sicker than I’ve ever been. They happened to see a growth in my native kidneys during a scan of my lungs that turned out to be cancer. That precipitated my two nephrectomies in 2014 and my two-year wait for a transplant, ending a few weeks ago. If I didn’t have pneumonia, that cancer could have metastasized and I would probably be dead. I don’t know.  There are an awful lot of lives I’m not living, and I’ve never found it very productive to imagine them.

I’d like to thank Jana for taking the initiative to post another call for a donor, and for encouraging others to post it. And thank you again anyone considering it. It is a bit strange to be the person whose face is floating on all of those posts, to be the subject of such a public story. It kind of feels like I’m not entirely in control of my self, that I’m being attended to out in the world by so many people. But I’m grateful – it’s kind of my Lou Gehrig moment.

On Wednesday I went to work at school. I had dialysis, and I figured that would go easier if I stuck to my routine. Today, however, I stayed home. Corinne and I had ordered a LOT of Girl Scout cookies last week and they were delivered last night. So I started in on 20 boxes of Samoas, watched some Netflix, marveled at the immense response on Facebook and relaxed. I continue to feel all the things, some of them a great deal. Tomorrow, it’s back to work and dialysis. Thanks for reading. 

UPDATE: My mom did some research and discovered that as of 2010 there are five known cases of a neurofibroma tumor in a kidney - that's not transplanted kidneys, that's all kidneys. Crazy!