Building the donor chain

Posted on Tue, Jul. 01, 2008
Building the donor chain
By Kristine Crane

When Bill Coram's kidneys started failing, his friend Tim Shain offered to donate one of his.

But their blood types didn't match, and the plan died. Or so they thought.

Coram still got a kidney from his friend, just in a very roundabout way.

The two signed up for a new chain-reaction transplant program that finds matches for pairings of recipients and their incompatible donors throughout the country.

It's run by the Alliance for Paired Donation, and it works like this: A patient who needs a kidney recruits a friend or family member to donate a kidney. That kidney will go to someone who needs it. In return, the APD finds the right match for the recipient.

The system should shorten the amount of time people have to wait for kidneys, according to the National Kidney Foundation. It could also cut back on dialysis treatments, which on average cost twice as much as transplants.

Joining the APD allows people in need of a kidney to take a more active role in finding a match than they would have on other waiting lists. At the same time, it removes some of the pressure for them to find their own direct donor.

The Toledo-based nonprofit has an estimated 130 pairs in its system, and has arranged 19 kidney transplants since it started in January 2007. It expects to do nearly 60 this year.

Coram was the first person in North Carolina to get a kidney through the program. He was the eighth recipient in the longest string of donations that so far includes 10 people. (See box.)

How his story began

Coram, 54, was alarmed when he had blood in his urine 12 years ago. An ultrasound revealed cysts in both of his kidneys: He had polycystic kidney disease, which blocks the kidney from filtering the body's waste products.

He was 42, and his doctor said when Coram hit his 50s or 60s, his kidneys would start failing.

When that happened a decade later, Coram started dialysis, which artificially filters the body's waste products. He hooked up to the dialysis machine for eight hours three times a week. He felt drained and didn't want to depend on dialysis for the rest of his life.

So he started looking for a replacement kidney and hoped to find one from a living donor because those organs last about 16 years, twice as long as cadaver kidneys. (People who donate one kidney are usually able to live normal lives with their remaining kidney.)

Coram asked friends and relatives, and made a plea for a kidney at his church, the First Baptist Church in Lincolnton. About 20 people stepped forward, but no one was a perfect match.

Among them was Sunday school acquaintance Tim Shain, 42, who was determined to help Coram get a kidney. He had heard Coram's teenage kids publicly pray for their dad to get a kidney. Shain, who has kids the same age, knew that he had to do something.

Shain's wife, however, wasn't thrilled about his decision at first. “I was angry,” she said. “I thought he was taking his life for granted and not considering the kids and me. We'd been married 18 years, and had always done everything as a team. This was his first solo act.”

But when Pam realized her husband's gesture was a spiritual act, she found his generosity humbling, she said.

In February, four months after Shain and Coram signed up for the APD, Coram was driving to church when he got a call from the Wake Forest University Baptist Medical Center: The APD had found a kidney for him from a 52-year-old man in Atlanta. They would fly the kidney to Wake Forest two days later so Coram could have his transplant.

This plan would proceed on one condition, Coram recalls: “They told me, ‘Tim still has to donate to someone else. If not, the whole thing is off,'” Coram said. Shain assured them he would follow through. Coram got his transplant. Shain gave up one of his kidneys three weeks later.

Loyal participants

APD Medical Director Dr. Michael Rees, a transplant surgeon at the University of Toledo, says he vetted for potential dropouts early in the program, and no one has backed out so far. The APD does not require participants to sign written contracts. But they do sign consent forms with the transplant centers protecting donors' right to change their minds about donating up until they go into the operating room.

“After the first few donors, I got a sense that people weren't going to cheat. They've already said they're willing to give a kidney to a loved one; then they've made the extraordinary step to give to a stranger. When they are willing to do that, they understood what they got themselves into,” Rees said.

Although Shain's energy dropped after the transplant, he's now training for a marathon.

Many donors want to ensure their kidneys are going to people who will take care of them, Rees added. Steve Zunde, Coram's donor, is also a runner with good dietary habits, and he asked that his kidney be respected. Coram called Zunde his “hero” in their first e-mail exchange, and the two will meet for the first time later this month.

Coram is careful to protect his new kidney by drinking more water and less soda. He feels as energetic as he did before he was diagnosed with kidney disease more than a decade ago.

He recently played tennis for the first time in more than 20 years.

When Bill Coram's kidneys started failing, his friend Tim Shain offered to donate one of his.

But their blood types didn't match, and the plan died. Or so they thought.

Coram still got a kidney from his friend, just in a very roundabout way.

The two signed up for a new chain-reaction transplant program that finds matches for pairings of recipients and their incompatible donors throughout the country.

It's run by the Alliance for Paired Donation, and it works like this: A patient who needs a kidney recruits a friend or family member to donate a kidney. That kidney will go to someone who needs it. In return, the APD finds the right match for the recipient.

The system should shorten the amount of time people have to wait for kidneys, according to the National Kidney Foundation. It could also cut back on dialysis treatments, which on average cost twice as much as transplants.

Joining the APD allows people in need of a kidney to take a more active role in finding a match than they would have on other waiting lists. At the same time, it removes some of the pressure for them to find their own direct donor.

The Toledo-based nonprofit has an estimated 130 pairs in its system, and has arranged 19 kidney transplants since it started in January 2007. It expects to do nearly 60 this year.

Coram was the first person in North Carolina to get a kidney through the program. He was the eighth recipient in the longest string of donations that so far includes 10 people. (See box.)

How his story began

Coram, 54, was alarmed when he had blood in his urine 12 years ago. An ultrasound revealed cysts in both of his kidneys: He had polycystic kidney disease, which blocks the kidney from filtering the body's waste products.

He was 42, and his doctor said when Coram hit his 50s or 60s, his kidneys would start failing.

When that happened a decade later, Coram started dialysis, which artificially filters the body's waste products. He hooked up to the dialysis machine for eight hours three times a week. He felt drained and didn't want to depend on dialysis for the rest of his life.

So he started looking for a replacement kidney and hoped to find one from a living donor because those organs last about 16 years, twice as long as cadaver kidneys. (People who donate one kidney are usually able to live normal lives with their remaining kidney.)

Coram asked friends and relatives, and made a plea for a kidney at his church, the First Baptist Church in Lincolnton. About 20 people stepped forward, but no one was a perfect match.

Among them was Sunday school acquaintance Tim Shain, 42, who was determined to help Coram get a kidney. He had heard Coram's teenage kids publicly pray for their dad to get a kidney. Shain, who has kids the same age, knew that he had to do something.

Shain's wife, however, wasn't thrilled about his decision at first. “I was angry,” she said. “I thought he was taking his life for granted and not considering the kids and me. We'd been married 18 years, and had always done everything as a team. This was his first solo act.”

But when Pam realized her husband's gesture was a spiritual act, she found his generosity humbling, she said.

In February, four months after Shain and Coram signed up for the APD, Coram was driving to church when he got a call from the Wake Forest University Baptist Medical Center: The APD had found a kidney for him from a 52-year-old man in Atlanta. They would fly the kidney to Wake Forest two days later so Coram could have his transplant.

This plan would proceed on one condition, Coram recalls: “They told me, ‘Tim still has to donate to someone else. If not, the whole thing is off,'” Coram said. Shain assured them he would follow through. Coram got his transplant. Shain gave up one of his kidneys three weeks later.

Loyal participants

APD Medical Director Dr. Michael Rees, a transplant surgeon at the University of Toledo, says he vetted for potential dropouts early in the program, and no one has backed out so far. The APD does not require participants to sign written contracts. But they do sign consent forms with the transplant centers protecting donors' right to change their minds about donating up until they go into the operating room.

“After the first few donors, I got a sense that people weren't going to cheat. They've already said they're willing to give a kidney to a loved one; then they've made the extraordinary step to give to a stranger. When they are willing to do that, they understood what they got themselves into,” Rees said.

Although Shain's energy dropped after the transplant, he's now training for a marathon.

Many donors want to ensure their kidneys are going to people who will take care of them, Rees added. Steve Zunde, Coram's donor, is also a runner with good dietary habits, and he asked that his kidney be respected. Coram called Zunde his “hero” in their first e-mail exchange, and the two will meet for the first time later this month.

Coram is careful to protect his new kidney by drinking more water and less soda. He feels as energetic as he did before he was diagnosed with kidney disease more than a decade ago.

He recently played tennis for the first time in more than 20 years.
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Quantifying the need

According to the United Network for Organ Sharing (www.unos.org), there are currently about 76,000 people in the U.S. waiting for a kidney transplant. This number has jumped from 16,294 in 1989.

In 2007, there were 10,587 kidney transplants from deceased donor organs and 6,038 from living donors in the U.S.

In North Carolina, there were 340 kidney transplants from deceased donors and 117 from living donors.

In South Carolina, there were 143 transplants from deceased donor organs and 39 from living donors.

To join the Alliance for Paired Donation, register on the organization's Web site: www.paireddonation.org

Registration is free. Recipients' insurance covers their pairing donors' medical expenses, but donors must cover their own travel costs if they travel to the recipients' transplant centers.
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