A New Normal

Nobody likes to listen to someone brag about themselves. The best charity is done anonymously and performed in silence. Your gift,  about the person receiving it, not about yourself. Doing a good act to aggrandize oneself, to revel in one’s goodness, doesn’t make the act bad per se, but it just seems wrongheaded. When you are constantly trumpeting something good you may have done, you make it seem like you don’t care about the beneficiary, like you’re just acting out your own tumescent ego.

All of this is in the way of asking how should I discuss my kidney donation without sounding like simply a self-righteous jerk? I ask this as someone who’s probably more than a bit self-righteous (though hopefully not more than a bit of a jerk). Perhaps a better question is, should I talk about it at all? Better, perhaps, to give quietly and unassumingly, to make it about the gift rather than the giver.

Few have accused me of being quiet and unassuming: Where’s the fun in that? I’d like to think, however, that my telling people about my donation isn’t driven by some desire for recognition (not typically my thing) or to hear the sound of my own voice (definitely my thing). In part, my desire to tell people reflects the drive to be honest about what’s going on in my life. I could horde  my privacy from those who ask me about why I’m taking my time off of work, but why not just tell them the truth?

Perhaps to be so detailed is immodest, but if so, it’s immodesty in pursuit of a good cause. As I’ve gone through with my donation,  several friends I’ve talked to about it have begun exploring whether that decision would be a good one for themselves. When I see the gleam of curiosity in the eyes of coworkers to whom I tell my story, I can’t help but thinking that if one of them were asked by a loved one in need, the fact that they knew someone who donated might lead to them being generous and feeling better about the choice.

I feel like the biggest obstacle to people giving a kidney, more even than whatever sacrifice donation involves, is that it doesn’t seem like a regular, everyday, choice: potential donors (that’s you, dear reader) don’t approach it as a feasible option, to be selected or rejected depending on one’s preferences. Spreading awareness that someone you may know, someone like you, has donated their kidney and (fingers crossed) been perfectly OK may bring donation a bit closer to being a significant but standard choice in your mind.

It may seem that the reason altruistic kidney donation feels like such an unusual gift is just that it imposes a greater harm than other choices that are more typical. This misunderstands the costs of kidney donation (it’s a laparoscopic surgery, has no impact on the donor’s long term health, and does not increase the donor’s chance of kidney disease), but more importantly, regarding giving a kidney as an extraordinary sacrifice undersells the difficulty of decisions that are considered normal and are made every day. Thousands of college graduates devote two years of their lives to working 80-hour weeks teaching underprivileged students at Teach for America; thousands more go to developing countries in the Peace Corps. Even more commonly, soldiers volunteer to leave the comforts and safety of the modern U.S. to serve their country in places where every day could ruin their lives with gunfire or an IED. All of these people take up far greater burdens than those assumed by donors, but people picture them as sane, reasonable options for how to do good in the world: noble, yes, but more importantly, normal. I want to tell my own story so that people can see that a donor can be a normal person with a normal story. Someone who’s non-heroic and flawed, someone who can be stubborn and slothful, someone who has a higher opinion of himself than he probably should, someone who isn’t above using his donation to impress women. By talking about my donation and showing readers that, yes, real people, normal people, actually do make this choice, I hope to make it seem like one that’s worth considering. Sure, I want readers to think donating a kidney is a good decision, but really, I’d settle for it just seeming like a sane one.

(Previous posts in this series can be found (in order) herehere, herehere, and here)

 

False Starts

On Thursday, I mentioned that there had been a couple delays and surprises in the run-up to my surgery. Let me explain:

When I first made my decision to donate, back in April, I thought I would need to use up vacation time at work to donate my kidney. Accordingly, I planned on doing the operation in mid-December, allowing me to use Christmas and New Years to minimize the amount of vacation days I’d have to spend (My Judaism renders Christmas insignificant to me except as a chance to tell people about Hanukkah Harry).  Once my work informed me that the surgery would be covered as paid medical leave, I modified my desired time slightly to be shortly after Thanksgiving, with a hoped-for donation date of either November 29 or 30 (Beth Israel does surgery on Tuesdays and Wednesdays). My parents, who moved  to Florida last September, would be up for Thanksgiving, and I couldn’t think of anything that would make my mom more thankful than surgery for her oldest son. She’s not the strongest advocate of donating a kidney to a stranger, but she wanted to be here to take care of me while  I was in the hospital and convalescing at home.

My goal for the Thanksgiving donation, was to create a chain of “paired donations.”  Paired donation is a fairly new but very valuable trend in the transplantation. Here’s how it works: say that I would like to donate to my brother, Bob, and you’d like to donate yours to your sister, Sue. If I don’t match Bob, and you don’t match Sue, but I do match Sue  and you do match Bob, we’d pair off and swap kidneys, you to Bob and me to Sue so that each of our intended beneficiaries ends up with a transplant that we couldn’t give ourselves. If an unpaired donor puts in a kidney, it creates a chance to make longer chains of donation, and allows multiple exchanges.

I had hoped to be that unpaired donor, and my name was submitted in a drawing to match up pairs on October 18th. The next day I discovered that I’d be starting a a  chain of, I believe, five people and that we’d likely be able to do the surgery on my desired date. I was obviously excited, both to get the day I wanted and to be able to contribute to multiple transplants. I quickly gave a blood sample with which to run a cross-match that would ensure that  the intended recipient had not built up  immunity against markers on my kidney. This test came back positive, and that’s bad: it means that their body would reject my kidney. Because their personal information is understandably confidential, I have no idea what happened to whoever I had been paired with, nor to the other recipients with whom the chain had been made, though of course I still speculate.

Rather than wait another month  for another drawing of paired matches, I instead decided  to try my luck with an individual recipient on Beth Israel’s internal waiting list, still hoping to make the post-Thanksgiving date. I submitted samples  to be matched against five potential recipients: each test came back negative (that’s good), and I was set to give my kidney. By then, however, the operating dates I had wanted had been booked up, so my surgery was pushed to December 6th. A fairly small inconvenience. The main effects were: (1) to extend the dead period at work where I’d be sitting on my hands because I couldn’t take on new deals and (2)   to  require my mom to stay at our family friend’s house for another week rather than head back to Florida with my dad . This made the delay last week (which I wrote about on Thursday) more than a bit irksome to her.

Minor issues all, but they point to medical care’s unpredictability that I as, luckily, a novice, have only recently and mildly discovered. I’m undergoing an elective surgery, have as much support in as idyllic a set of circumstacnes as a patient is likely ever to have, and have experienced only minor deviations to my plan for how my surgery would work out. For me, it’s been less emotional roller coaster and more emotional Ferris Wheel. The potential recipients of my kidney, however, have a bit of a different story. To them, the best case scenario for such delays, reversals, and surprises is brutal,vertiginous, worry; the worst consequences are deadly. My mom’s heart jumps to her throat at even the mild bumps in the road I’ve experienced; how much worse are  the feelings for the families of those for whom this surgery is not a choice?

In order to end on a slightly more happy note (I hope), my transplant looks like a go for tomorrow. Wish me luck.

(Previous posts in this series can be found (in order) herehere, here, and here)

My Kidney Donation

Four years ago I read an article by a forty-nine year old psychiatrist named Sally Satel. In 2004, her kidneys were breaking down, and her article was about the experience of trying (ultimately successfully) to find a donor. Her search sounded like an awful thing to go through.  In the article, three different people, one after the other,  each told her that they would donate, and then weeks or months later each time, all three of them, one after the other, told her that they wouldn’t. I’d imagine that if you need a kidney, one of  the horrible experience you must undergo must be to need to beg for your life (in a genteel and passive-aggressive way): telling one friend after another about your unfortunate condition while silently hoping that they’d take pity and offer to help.  Surely, even the luckiest victim of kidney failure must find themselves feeling a twinge of hope at the desired words: “Maybe, I can do something;” and “I might be a match;” all the while trying to not become encouraged as the conversation is concluded with a: “Let me look into it” or  “Let me see what my husband thinks.” Of course even people with a relatively easy experience finding a donor likely must have had to replay that gut-wrenching game at least a few times before achieving success. Satel’s journey was worse, after running that emotional gauntlet, she found three different people who each made a firm commitment to grant her the hoped-for kidney and then let that commitment linger for weeks or months and become firmer and firmer in her mind.  Only then, after she maybe (at least the first couple of times) let herself believe that her life would be saved, three different people disappointed her. I have never had anything in my life that could possibly have led to that level of despair, and she went through it three different times.  Luckily, a fourth person, a modest acquaintance from work, came through. Continue reading