A Harvest for Life
Of the more than 13,000 kidney transplants performed in the U.S. last year, about 40% were achieved with the help of live kidney donors. I was one of them. Last January, I donated a kidney to my mother.
Usually, kidney transplants are not technically complicated procedures. Still, to volunteer to be a live organ donor is to enter a discrete and anomalous class of perfectly healthy people who submit to major surgery for no therapeutic or cosmetic reason. We willingly become worse--or less--than we were before. Live organ donation is a wonderful thing, but it’s also a little gruesome, letting your body be used for spare parts. It goes against the instinct for self-preservation. If there are saintly souls who are able to endure this ordeal without ambivalence, I wasn’t one of them.
In 1999, my mother’s kidneys began to fail. Kidney disease is progressive; it almost never slows down or reverses itself because, in their effort to function more efficiently, the damaged kidneys destroy themselves. More than a year ago, my mother’s nephrologist recommended a kidney transplant as the best therapy. Kidneys for transplant can come from cadavers--but only from people who die while on life support--or from live donors. We were told that kidneys from cadavers do become available, but people remain on waiting lists for years as their bodies weaken from dialysis, the thrice-weekly method of removing toxins from the blood when the kidneys no longer can.
Despite the marked increase in live organ donation in the U.S. (the number doubled between 1994 and 2001), the gap continues to widen between potential recipients and suitable organs. At present, 51,000 Americans are awaiting kidney transplants; eight to nine die every day. Part of the reason for the crushingly long wait--and part of the reason for the rise in live donations--is that so few Americans carry organ donor cards, and in this country organs can’t be harvested without such a card unless there is specific permission from the family.
In at least 13 countries, including France and Spain, the presumption is that organs are up for harvest. Those who wish not to have their organs used after they die must opt out formally and carry a non-organ-donor ID card (although even in countries with so-called presumed consent laws, the family can still override the wishes of the deceased). In Belgium, live donation remains unpopular and all but unnecessary because only 2% of Belgians opt out of presumed donation, and there is virtually no organ waiting list. Live donation “is never our first choice,” Belgian transplant expert Yves Vanrenterghem says. Austria’s experience has been similarly successful, and Spain, where just 18% of the population opts out, has seen its number of actual transplants double in a decade.
When my two brothers and I heard about the three- to five-year wait for a cadaveric kidney, we all agreed to be tested for compatibility of blood type, tissues and antigens. I was the only match. Then I went through a battery of tests to ensure that my kidney and I were healthy enough to do this. I aced everything. In general, men have larger, more effective kidneys than women, which is why, in terms of gender, a male-to-female transplant is the best-case scenario. The tests showed that my two kidneys were doing the work of three: I had superkidneys. The post-op restrictions would be few and manageable: no contact sports (to protect the remaining kidney), no Advil. I was assured that the donation would not affect my longevity or the quality of my life.
Today, most live kidney donations in major transplant centers are being done laparoscopically--a minimally invasive kind of surgery that leaves a two- to three-inch scar. All through the testing process we were operating under the assumption that I would have it this way, too. But a week before my surgery, I was told that my musculature pretty much disqualified me for laparoscopy. That meant major surgery: a longer hospital stay, a longer recovery period, greater risk of complications and, most troubling to my bodybuilder vanity, a 6- to 10-inch incision. The transplant unit had never lost a donor, but the team’s head surgeon couldn’t “guarantee” that I’d be as physically strong after surgery.
I freaked out on the doctors, who, to their credit, were unflappable. In the end, I decided to go ahead, but the night before the surgery was one of the worst of my life.
The surgery was a success. My kidney began working in my mother even before her incision was closed. After a short-lived rejection episode, she gradually improved. She’s taking anti-rejection drugs and will probably be on some form of them for the rest of her life, but for all intents and purposes, she’s cured. My five days in the hospital weren’t as bad as I’d imagined. Everyone was marveling at the “small” five-inch scar on my side (I guess my tantrums, and the fact that my coordinator--a goddess named Eleanor--had been “stamping her feet” about my aesthetic concerns, worked).
The next few weeks were not easy. I lost 17 pounds. I went back to work two weeks after the operation, walking like an old man. Against doctor’s orders, I returned to the gym around the same time (struggling with 10-pound weights), which saved my sanity. Now, five months later, I’m about 95% myself: I still feel things shifting around in there, and the abdominal muscles on my right side may take another half-year to look and feel normal again.
To his credit, Health and Human Services Secretary Tommy Thompson has instituted a $10-million federal program to increase organ and tissue donation. But if we adopted a presumptive donation system, fewer healthy people would have to submit to major surgery to save the lives of their children, parents, siblings, friends and--increasingly--strangers. The success rates of live-donor kidneys are somewhat higher than cadaveric (though both work well more than 90% of the time), and certainly people would--and should--still agree to become live donors. But imagine those three-year-long lists, those seasons in medical limbo, or medical purgatory, being slashed to one year or six months. It’s something to think about. And those cadaveric donors won’t feel a thing.
