The surgery was simple; the process is another story

USA Today , October 23, 2006

Most people think of "organ donors" as dead people. Public campaigns encourage this idea, urging Americans to sign donor cards and let their families know they want their organs to go to others when they die. In Dallas, there's a Texas Organ Donor Memorial Walkway,

I'm from Dallas, and I'm a kidney donor. But my name isn't on the walk because I'm very much alive.

You don't have to be dead to give someone a kidney. You just have to be healthy and willing. Your body can function perfectly well with one kidney rather than two. Nor do you have to be a close genetic match. Thanks to anti-rejection drugs, nowadays a compatible blood type is generally enough.

Until last fall, I had never thought about donating a kidney. I had never even given blood. Then a mutual friend told me that Sally Satel needed a transplant. Without one, she'd soon be on dialysis, tied at least three days a week to a machine to filter poisons from her blood. Dialysis isn't a cure for kidney disease. It's more like an iron lung, extending the patient's life but imposing a physically debilitating prison sentence.

After doing some research and getting my husband's reluctant OK, I told Sally I'd give her a kidney. After I passed all the necessary medical tests, we had our surgeries on March 4.

A kidney donation is a big deal to the recipient, but public perceptions exaggerate what's involved for the donor. Any kind of surgery--including common cosmetic procedures--is dangerous. But donating a kidney was not a life-changing event.

The laparoscopic surgery required only a few small incisions. The largest is about 3 inches long, just big enough to get the kidney out. I was in the hospital for three days and able to fly home from Washington after a week. It took about a month to recover fully. Except for a little skin sensitivity and a scar that sometimes itches, I'm back to normal.

Kidney patients desperately need many more living donors. In 2005, there were about seven times as many people waiting for kidneys as there were cadaver organs available, and the waiting list is growing. About every two hours, an American dies waiting for a kidney transplant. Even in a best-case scenario in which all transplantable cadaver kidneys are used, that rate could only be cut roughly in half. Deceased donors can't fill the gap.

But, as I discovered firsthand, you have to be incredibly pushy to make a live donation to anyone but a close relative. My doctor said, "You know you can change your mind." My parents were appalled. Many people couldn't understand why I didn't wait until Sally got sicker or had been on dialysis for a while. Most people have a visceral reaction against the whole idea.

This widespread attitude pressures donors to back out. It also shapes policies that deter living donors. Many hospitals and bioethicists seem to believe a demeaning set of assumptions:

  • Normal people won't give up an organ except under coercion.
  • Anything that encourages a decision to donate is coercion.
  • To avoid coercion, living donors should be discouraged.

Some transplant centers require intrusive psychological probes that scare people off. Some bioethicists treat benevolence or religious conviction as a mental disorder. Even relatively supportive transplant centers like mine make it easier to quit than to go through with it.

The scrutiny is particularly nasty when people want to give to "strangers"-- not truly unknown people but patients they've gotten to know through Internet sites or news coverage. Many centers flatly refuse "directed donations" to specific strangers, forcing donors to lie about how they met recipients.

And, of course, any hint of financial compensation is suspect. Federal law forbids any "valuable consideration" in exchange for an organ.

Even without changing the law, more could be done to encourage, support and respect kidney donors. Transplant centers could raise funds to cover donors' lost wages, which is legal but rarely done. Churches could adopt patients, solicit members to become living donors and provide child care, meals and transportation after surgery. If every Baptist congregation in the country found a donor for one kidney patient, the waiting list would vanish--and that's just the Baptists.

But if we really cared about the welfare of kidney patients, the law would allow organ volunteers to receive compensation from hospitals and insurers (government or private)--with full legal, medical and financial protections.

Some donors would still happily help friends or relatives for free, as I did. Others would have mixed financial and humanitarian motives--just like surrogate mothers and egg donors, firefighters and soldiers, and, of course, transplant surgeons and foundation executives.