Here's Looking at You, Kidney
How and why I became an organ donor -- and how I kept people from talking me out of it.
Texas Monthly, June 2006
Until last November, I'd never thought about being a kidney donor. I hadn't known anyone with kidney disease, and like most people, I hadn't filled out an organ donation form when I'd gotten my driver's license. I'd never even donated blood. That all changed after I ran into a friend and asked, "How's Sally?" I got an unexpected answer: "She's. . . all right," in a tone that made it clear she was most definitely not all right.
Sally Satel and I have been friends since 1997. We're kindred spirits -- strong-willed, intellectual iconoclasts who are a bit too ingenuous for our own good. But she lives in Washington, D.C., where she's a fellow at a think tank, and I live in Dallas. We almost never see each other and communicate mostly by e-mail. We follow each other's work but don't share our day-to-day lives. Last fall, no one would have called us close.
So I had no idea Sally's kidneys were failing. She needed a transplant, our friend told me. Otherwise, she'd soon be on dialysis, tied at least three days a week to a machine that would filter poisons from her blood. For someone who prizes her independence and freedom of movement as much as Sally does, dialysis would have been a prison sentence.
With no spouse, children, siblings, or parents to offer her a kidney, I thought she must be desperate. I knew the chances of getting a cadaver kidney were low, although I didn't realize how truly miniscule: More than 66,000 Americans are on the waiting list for the 6,700 or so cadaver kidneys that are available each year. Just thinking about her situation made my heart race with empathetic panic.
"Maybe we can do something to get Sally a kidney," I said. It probably sounded as if I were proposing a publicity campaign. After all, she and I and our mutual friend are in the persuasion business: We write books and articles and have lots of press connections. What I really meant, though, was "Maybe I can give Sally a kidney." At the time, it seemed like a perfectly natural reaction.
Usually when someone is seriously ill, all you can do is lend moral support and maybe cook some meals or run a few errands. Nothing you do will make that person well. But if you donate a kidney, you can (with the help of a team of medical specialists) cure her. Who wouldn't want to do it? I had no idea what a strange thought that was.
Nor did I sort through my motivations. I've spent a good bit of my life trying to save the world, mostly by working to beat back bad government policies, including some that would have stifled medical research. But even when your side wins, the victory is incremental and rarely permanent. And people of goodwill dedicated to the same good cause can be awfully contentious about how to achieve their goals.
In this case, there was something reassuring about the idea that the benefit wouldn't depend at all on my talents, persuasiveness, or intellect. It would be simple. All I had to do was show up. In middle age, I've realized that I can't save the world. But maybe I could save Sally. Someone had to.
Except for living in Texas, I was the ideal candidate. I was healthy, with no family history of kidney disease. Like Sally, I had no kids depending on me. (Unlike her, I had a big family of potential kidney donors, just in case.) I was self-employed, and my husband, a professor, had a fairly flexible schedule. Neither home nor work obligations would pose a problem.
But first I had research to do. I didn't want anyone to know I was considering the idea unless I was absolutely sure I'd go through with it. I didn't want to get Sally's hopes up and then renege. That would have been worse than not volunteering in the first place.
An hour on the Internet told me what I needed to know. All a donor and a recipient have to have in common is a compatible blood type; anti-rejection drugs take care of the rest. For the donor, the operation isn't especially risky or particularly difficult to recover from. Laparoscopic techniques have replaced the old side-splitting gashes with a few tiny holes and an incision two- to three-inches long, just big enough to slide out the kidney. The donor usually spends a couple of days in the hospital and, other than athletic exertions I'd shun anyway, can resume normal activities within a week or two. The main dangers are those of any major surgery: general anesthesia, bleeding, infection. They're serious risks, but people go through equally tough operations every day for purely cosmetic reasons.
Contrary to what most people think, living with one kidney is basically the same as living with two. The remaining organ grows to take up the slack. Someone with a single organ is no more vulnerable to kidney failure than someone with a pair, because most kidney disease attacks both at once. The exceptions are injuries, of course, and cancer. I was willing to take my chances.
What about my husband? As I'd expected, he wasn't thrilled with the idea of letting someone slice open his wife, and he was afraid of the tiny but real risk that I might die. He liked Sally but didn't know her that well. He's a rational guy, however, and he knows what sort of person he married. He said okay.
I sent Sally a quick e-mail, confirming that she did in fact need a transplant. She already had a likely prospect, she said. "If your lead doesn't come through, let me know," I wrote back. "If I'm compatible, I'll be a donor." After a couple more exchanges, Sally put me in touch with her transplant coordinator.
The first step to becoming a kidney donor, I discovered, is to give blood -- the easiest way to find out your blood type and, conveniently, a great test of squeamishness. My mother had always assured me that I was type O, like her, and thus a universal donor. Yet I didn't even make it to the blood typing. Like many women, I was a shade anemic, with hemoglobin of 12.3 grams per deciliter instead of the required 12.5.
I went into training, eating iron-rich Total cereal for lunch every day. A week later, I hit the magic number, contributed a pint to the Texas blood supply, and a couple days after that, found out my blood type. Bad news: I was A positive, not universally compatible after all. "Will that work?" I e-mailed Sally.
Miraculously, it would. She was also type A, but she didn't expect to need me. I was to be the backup to "Bob from Canada," a guy Sally had found via matchingdonors.com, a site for people looking for organ donors. The mysteriously generous Bob was our hero. (My husband was particularly fond of him.)
But in mid-December, Sally suddenly lost touch with him. "I feel like Charlie Brown trying to kick the freaking football and Lucy keeps yanking it away," Sally e-mailed, asking me to get some basic blood and urine tests done in Dallas. By early January Bob was gone. A busy life had interfered with his good intentions.
Soon I was at the Washington Hospital Center, in D.C., filling lots of blood vials to make sure I had no diseases my kidney might pass along. I got an X-ray and an electrocardiogram. On a later trip, I met with a social worker, a nephrologist, and the surgeon, and I had a CT scan to confirm that I really had two healthy kidneys and determine which was the better of the two to take (in my case, the right).
The screening process was peculiarly gratifying. My brothers climb mountains and run marathons, and my parents work out with personal trainers three times a week, which makes me the family couch potato. My primary form of exercise is walking to restaurants. But compared with most would-be kidney donors -- the not-so-healthy relatives of very sick people -- I was a paragon of fitness: blood pressure on the low end of normal, no hepatitis C, no diabetes, an abdomen that these days passes for slim. (Laparoscopic surgery is more difficult, and sometimes impossible, if the donor is obese.) Everyone at the hospital was impressed. Yea for me!
Most important, it turned out, I had the right personality. Donating a kidney isn't, in fact, a matter of just showing up. You have to be pushy. Unless you're absolutely determined, you'll give up, and nobody will blame you -- except, of course, the person who needs a kidney. When I went to see my Dallas doctor for preliminary tests, the first thing she said was "You know, you can change your mind."
To me, giving Sally a kidney was a practical, straightforward solution to a serious problem. It was important to her but not really a big deal to me. Until the surgery was scheduled -- for Saturday, March 4 -- and I started telling people about it, I had no idea just how weird I was.
Normal people, I found, have a visceral -- pun definitely intended -- reaction to the idea of donating an organ. They're revolted. They identify entirely with the donor but not at all with the recipient. They don't compare kidney donation to other risky behavior, like flying a plane or running 31 miles to the bottom of the Grand Canyon and back, as my brother did last summer.
I was scared, of course -- but of the surgery, not the loss of my kidney. I'd never been hospitalized before and, except for oral surgery when I was seven, had never had general anesthesia. Surgery, no matter how routine, is dangerous. The kidney is fed by a large renal artery and drained by a large renal vein. If the surgeon cut the wrong one, he'd have five seconds before I bled to death. (I didn't share this tidbit with my husband until after the operation.)
I did my taxes early so my husband wouldn't be stuck sorting through my business receipts if I were incapacitated, or worse. I arranged to stay at a friend's Washington crash pad. I asked the transplant coordinator to tell me, step-by-step, exactly what would happen once I got to the hospital so there would be no surprises.
Things went pretty much as advertised. One minute Sally and I were on beds being wheeled down the hall. I was nervous for about two seconds.
And then I woke up. My husband and parents were there, looking relieved. The nurse took off my oxygen mask so they could feed me ice chips -- not too many or I'd throw up. Eventually I moved on to water and clear foods, including tea to fight caffeine withdrawal. Sally had arranged a huge hotel-style room for me, complete with a sofa bed for my husband and real meals. He ate steak while I sipped broth and slurped lime Jell-O.
Yes, I did throw up. Three times and quite violently -- a reaction to the anesthesia. I got used to answering a list of excretory questions, starting with "Have you passed gas?" After 24 hours on a catheter, my body refused for a while to urinate on command. When I learned to pee again, the nurse did a victory dance. All in all, it was a very dignified experience.
The worst moment was an early-morning visit by a grave, haggard surgeon -- not mine but Sally's. What if Sally had died? What if giving her a kidney had killed her? I'd never seriously considered that possibility.
To my great relief, the surgeon said my friend was okay. But she had had a close call. She'd started hemorrhaging. They'd had to take her back into surgery to stop the bleeding. He'd done hundreds of these operations, and this had never happened. Sally was in intensive care. It had been a very long night.
A day later, when I was off my IV and able to walk through the hospital, we visited Sally. A tiny woman, she looked like a baby bird, with her short hair shooting up randomly and her skin slightly gray. She was groggy, a bit grouchy, and not entirely coherent. But she knew one thing clearly: "I almost died," she said.
On Tuesday we visited her again before leaving the hospital. She was still in the ICU but about to be moved. She looked like herself. She was talking to friends on her cell phone. What a relief.
Sally left the hospital the following Sunday, the day I had my surgical staples removed. We joined her and a couple of friends for a messy hamburger lunch at her apartment. The next day, we flew home to Dallas.
I never had much pain and, once I left the hospital, took nothing stronger than aspirin, which my surgeon prescribed to prevent blood clots. But it took me about three weeks -- longer than I expected -- to get back to normal. The surgery had left me easily exhausted. Always a sleepy person, I was taking four-hour naps and falling behind on my deadlines.
Then suddenly I was myself again, with only an occasional twinge in what my husband calls the KV (for "kidney void") to remind me of my medical adventure. I caught up with my work and started traveling -- short trips, with light luggage. My all-purpose excuse, "I just donated a kidney," had expired.
On April 10, less than six weeks after the surgery, Sally too went back to work. "I am waiting to be exhausted but I am not. . . darn," she wrote. "I may be back to normal. Don't think I am nuts but I liked being home and having everyone make a fuss."
She was finally better than before the operation. Her new kidney was working perfectly, she was no longer anemic, and she no longer had to take five medicines to ward off hypertension. I had never thought much of my kidney when I had it, but now it makes me proud.
She signed the e-mail "Spoiled in D.C."