Curlees Draw Attention to Other Kidney Patients Awaiting ‘Supreme Gift’

The story of Mission Viejo newlyweds Victoria Ingram-Curlee and Randall Curlee, though it might not have a fairy-tale ending, dramatizes the risks and sacrifices hundreds of live donors undertake each year to improve and even save the lives of loved ones suffering kidney failure.

National attention has focused on the Orange County couple as the gap between supply and demand for donated kidneys widens, and as relatives, spouses and even friends of ailing patients increasingly step forward to provide what one recipient called “this supreme gift.”

Ingram-Curlee, 45, still hopes to come through for her new husband, gravely ill with diabetes, even after a radiologist nicked one of her arteries during a routine test last week. Still, the injury could cause the transplant to be canceled.

Like a small but growing number of other Americans, she volunteered an organ rather than watch a loved one wait on a national list--perhaps for years--for a fortuitous gift from strangers.

The number of donations from living people in the United States jumped 52% from 1,812 in 1988 to 2,760 in 1993--most of them from parents and siblings of recipients, according to the United Network for Organ Sharing, the nonprofit organization in Richmond, Va., that administers the national data bank and waiting list.

Cadaver donations, though much greater in number, rose only 13% in the same period. The two sources of donated kidneys do not come close to meeting the demand: More than 26,000 people await kidney transplants across the country on any given day and fewer than 11,000 such procedures were performed in all of 1993. The wait for a cadaver organ already averages about two years, and the list of hopeful recipients is only getting longer.

In this bleak context, local and national organ donation agencies welcome the publicity Ingram-Curley has brought to their cause.

“I think (the Curlee case) can only encourage family members to step forward and offer to donate,” said Esther Benenson, spokeswoman for the organ sharing network. “It’s a wonderful love story. It can’t help but influence people in a positive way.”

Some physicians aren’t so sure, saying the media overplayed the storybook aspect of the case and ignored the science. “I feel a little annoyed at the hype about this case,” said Dr. Garo M. Tertzakian, director of the renal transplantation program at Western Medical Center-Santa Ana.

The public’s expectations were raised and dashed, he said, as though this were “theater” and not medicine, with all its attendant risks. “There should have been some disclaimers. This is, after all, not bringing the car to the garage and changing a tire.”

It is, in fact, major surgery that involves entering the body through an incision under the ribs and dissecting the kidney from surrounding tissues. For the donor alone, it typically takes 1 1/2 to two hours to perform and five days of recovery in the hospital.

Tertzakian and others stressed that the risk of complications from the procedure--such as infection--are remote. Dr. Ervin Ruzics, director of kidney transplantation at UCI Medical Center in Orange, estimated the complication risk at “a fraction of a percent” and the mortality risk as almost negligible.

Healthy donors continue to function well on one kidney, which increases its function and may even increase its size to the point that it’s almost working at the capacity of two, Ruzics said.

A pre-transplant nick in the artery, such as the one that delayed--and perhaps derailed--the donation from Ingram-Curlee, is considered extremely rare. But the case raises an ethical issue that transplant surgeons say they always must keep in mind: A donors’s health should never be sacrificed to improve the recipient’s outcome.

The screening process for live kidney donors in U.S. transplantation programs is rigorous, doctors said. Teams of evaluators seek to determine not only whether they make a good match for recipients, but whether the operation could compromise donors physically or psychologically. Evaluators are trained to look for signs, for example, that candidates are being pressured, against their will, by family members to proceed.

For recipients, from a medical standpoint, live donations generally are better than those from cadavers.

Relatives--particularly siblings--tend to provide the best matches for blood and tissue types. But beyond that, Benenson said, the kidneys of living donors do not undergo the damage that may occur during the shipping of cadaver organs.

Organs from living donors fail in less than 10% of the cases in the first year, but in slightly more than 20% of cadaver grafts, Benenson said.

Recipients say the gift of a kidney from a relative or friend is a meaningful sacrifice. When things go well, the donation can act as a powerful bond. But if the organ fails, guilt and disappointment on both sides can strain even the strongest relationships.

Randy Gull, 38, said his mother, Jeanette, of Anaheim, donated her kidney to him about a dozen years ago. It failed within 72 hours because of clotting problems.

“We were really close to begin with,” said Gull, who suffers severe diabetes. “We’re kind of distant now. We don’t talk as much as we used to. . . . I think it’s just because we’re afraid of what to say to each other.”

Gull later received a cadaver transplant that lasted years before failing. Now he is back on the national waiting list, hoping for another cadaver organ. Kidney dialysis is keeping him alive.

Another patient says a donation from his sister saved his life.

In 1989, Mike Ballantyne of Mission Viejo was declining fast. At 45, he was going blind and was almost completely disabled by diabetes.

He “didn’t feel right to ask” his two brothers and a sister if they would consider donation, he said. But the three of them discussed it among themselves and offered to be screened.

“It was unbelievable, just unbelievable,” Ballantyne said, still marveling over his family’s offer. As it turned out, he said, his 46-year-old sister, Connie Lockwood of Hesperia, was a perfect match.

“Of course I (weighed the risks),” she said. “I was a perfectly healthy woman. . . . I was concerned about my health and my children and my husband . . . . I don’t mean to sound pious but I’d matched so well, I knew I would be the one to do it.”

Though the procedure had to be postponed a few times because Ballantyne’s health was so poor, it ultimately was successful. Now he is taking a modest amount of medication--including the anti-rejection drug cyclosporine--but has recovered much of his sight and, perhaps as important to him, his sense of humor.

“You can’t believe how big a deal this is,” he said.

More Donor Kidneys

Number of living donor kidney transplants, 1988-1993

1993: 2,760

Number of kidney transplants involving cadaver organs

1993: 8,168

Source: United Network for Organ Sharing