The other links in chain of life

Second of two parts. You can read the first part here.

James "Scott" DeVinney, 63, the last link in a kidney chain, was at Thomas Jefferson University Hospital early Wednesday, Oct. 30, to receive his new organ.

Surgery was scheduled for 10:30 a.m. At 5:30 p.m., he was still waiting.

Where was the kidney?

For three years, the retired Atlantic City firefighter, who lives in Margate, had been surviving on peritoneal kidney dialysis. He was tethered to a tube for 11 hours a day, cleansing impurities from his body.

He and his wife, Jean, a retired fourth-grade teacher, grew more anxious by the hour. They so dearly wanted to be able to ride bikes on the boardwalk again, go out on their boat again, go to Florida - and live again.

DeVinney had a rare blood type, AB, that made finding a donor even more challenging. He had sat on a waiting list for three years.

But then in October - heavenly news. The DeVinneys were told an altruistic donor had come forward - Theresa Welsh, a Haddonfield pediatrician, though her identity was unknown to them.

Her donation would start a chain - triggering donations in New Hampshire, Ohio, New York, and New Jersey - and the last kidney would be coming back to Philly, to Jefferson, to him.

But where was it?

Had the chain broken?

A week earlier, Welsh, 55, had donated her left kidney to start the chain.

 She is among a small but growing group of what in the kidney world are called "nondirected" donors. Their kidneys go not to siblings or spouses, but to strangers, setting these chains in motion.

The National Kidney Registry, which has organized 167 chains leading to 771 donations, says nearly 200 donors like Welsh have come forward since it began in 2008.

"They restore your faith in humanity," said Garet Hil, the registry founder.

 All Welsh knew was that her kidney was going to New Hampshire, to Dartmouth-Hitchcock Medical Center, where a 56-year-old man with kidney failure would receive it - truly a gift of life.

What even Welsh didn't fully understand, and few do, is how remarkable kidney chains can be, requiring sublime coordination -  multiple transplants in many hospitals, occurring on the same day, with kidneys flying across the country. 

Luck is also important. With so many donors, recipients, surgeons, hospitals, couriers - myriad factors, even the weather - things can go wrong.

In 2007, before he founded the kidney registry, Hil, a businessman in New York, wanted to donate a kidney to his daughter, but he was not compatible.

 Most live kidney donations in America, about 6,000 a year, are between relatives. But donor and recipient must have compatible blood types, antibodies, and antigens. Sometimes it can be very hard for a person needing a kidney to find a match.

Hil tried to find other donors but could not.

About 15 years ago, hospitals had begun to do swaps. Find two incompatible couples - say, Hil and his daughter, and another father and daughter in a similar situation - and do an exchange.

Hil could give his kidney to the man's daughter. And that man could donate to Hil's daughter. Win-win.

Swaps grew into chains. Suppose an altruistic donor gave to Hil's daughter. Then Hil would donate his kidney to somebody else in need, whose partner would donate to another - creating a domino effect.

When Hil's daughter needed a kidney, he tried hospitals and organizations doing kidney chains.

 None had a compatible donor. Hil also felt none had a common registry or database of all potential donors, or a singularity of purpose - finding matches and making chains.

Eventually, Hil found a cousin to donate to his daughter, and both are doing well.

Then Hil changed his life. He started the National Kidney Registry, hoping to grow a common database, to increase the quality, speed, and number of living-donor transplants.

NKR started its first chain Valentine's Day 2008. The average is five transplants per chain.

One chain in 2012 triggered 30 kidney transplants over six months. Another this year led to 28, all within 40 days, and that one began with an altruistic donor who got the idea from watching The Simpsons.

NKR now has 75 participating hospitals, including Jefferson, and is growing.

The day after her surgery, Welsh was in her hospital room sitting by the window, knitting a baby blanket. Her first grandchild is due Dec. 9.

"Here's Madame Defarge," said her husband.

"Mike's so relieved, he can't stop talking," Welsh said of her husband, Mike Campbell, a Villanova law professor.

She was holding a little pillow over her abdomen.

"I don't like not being 100 percent," she said. "I can't wait to be 100 percent again."

"Don't get me wrong," she clarified. "I'm really glad I did it. I just want to be myself again."

She was walking the hallways.

The next day, even more herself.

And by the third day, she went home.

Five days after surgery, she was off pain medication. By Oct. 29, a week after surgery, she was taking walks in the neighborhood. And she was ready to go visit her new grandbaby next month - as planned.

Her kidney was also doing well.

As Welsh was having it removed in Philadelphia, the partner of its recipient in New Hampshire was also undergoing surgery at Dartmouth-Hitchcock hospital. That kidney flew the same day to Cincinnati.

While donors in Philadelphia and New Hampshire were having surgery, so was a donor in Cincinnati, the partner of the recipient there.

That kidney went to New York City, to NYP/Weill Cornell Medical Center, where the third recipient in the chain - first New Hampshire, then Cincinnati, and now New York - got a new kidney.

This all occurred the same day, Oct. 22.

The donor at Cornell was then to give a kidney to a person at St. Barnabas Medical Center in Livingston, N.J. And that recipient's partner was to give up a kidney to Scott DeVinney, back at Jefferson, closing out the chain where it began.

But that second stage of the chain wouldn't happen for a week, not until Oct. 30.

Interruptions often can't be avoided. It can be a challenge for hospitals to schedule two operating rooms and two surgeons - one for the donor, another for the recipient - on a specific day, the same day as four other hospitals. Especially on short notice.

For whatever reason, the chain paused for a week at Cornell.

At first, Theresa Welsh had hoped her kidney would trigger a chain reaching 10, 20, even 30 people.

But that is rare for several reasons.

The National Kidney Registry has a board of directors, doctors who set rules for deciding who gets chosen for a chain. These are factored into an algorithm, or formula, now in its third iteration, and programmed into the registry's computer.

When Welsh's data were put in, the computer spit out the best possible chain, one that would reach the most people, but also include the hardest to get transplanted.

"The matching system is constantly searching for ways to get these people matched that have been sitting in the system for a year and a half," said Joe Sinacore, the registry's director of research and education. "As soon as you make the hard match, their donor keeps the chain going."

Welsh's kidney went to the man in New Hampshire, in part, because his paired donor was a beautiful match for an extremely challenging recipient in Cincinnati. The recipient at Cornell was chosen in part because his corresponding donor was a perfect match for a recipient in Livingston, who had been almost impossible to match.

The Livingston recipient's corresponding donor, however, had an unusual blood type, AB. On the day Welsh's chain was created, there were 299 pairs in the registry pool. None was suitable - considering all the factors, age, size, blood type, and more - to continue the chain.

So the chain is closed - preferably back at the hospital where it began.

Every transplant hospital has waiting lists of people who need kidneys.

They typically wait for donations from cadavers - and that waiting list can easily be five years. And cadaver kidneys, while a blessing, last on average only half as long, experts say, as a living-donor kidney - on average 16 years.

"AB blood types can pretty much only give to an AB blood type," said Sinacore. "We could have tried and tried for months to find a match within our pool. . . . We were lucky that [Jefferson] had an AB on the wait list."

Scott DeVinney grew up at the Jersey Shore. He was an Atlantic City lifeguard for 10 years, and firefighter for 25 years. He went to the gym, rode his bike, loved golf, and took decent care of himself.

In 2007, he got a rare kidney disease. Doctors couldn't say how or why he got it. He always wondered whether it was from his days as a paramedic in the '70s and '80s, when he "was around all kinds of stuff."

When his kidneys failed, his wife wanted to donate, but her family had a history of kidney disease. His brother couldn't because of an illness. Even his 91-year-old mother wanted to donatee but was too old.

He went on traditional dialysis, going to a center three days a week.

Three years ago, he was able to switch to peritoneal dialysis, which he could do at home, for 11 hours every night.

A couple of years ago, DeVinney thought he was going to get a cadaver kidney. A prisoner had hanged himself. DeVinney was summoned to the hospital. But the inmate survived. No kidney.

As he waited Oct. 30, he was dreading: "Not again."

Ideally, the registry and transplant teams like to have recipient and donor surgeries happen simultaneously.

If a recipient gets a kidney, but his partner waits to donate, things can happen.

"The donor could get in a car accident," said Hil, "or have a medical condition."

Or get cold feet. It happens. The loved one has already received a kidney.

"The longer he hangs around, the higher the probability is he might change his mind and walk away," Sinacore said. 

Did this nearly happen along the chain started by Theresa Welsh?

"We got notice the day before . . . that perhaps one of the donors would basically step back and decided not to donate anymore," said Cataldo Doria, DeVinney's surgeon at Jefferson and head of the transplant program.

But, many hours later than expected Oct. 30, surgeries in New York and Livingston took place.

Doria waited to prep DeVinney until he knew the kidney from Livingston was on its way. He hoped to limit time the kidney was out of the body.

Every transported kidney has a GPS in the cooler. "So we always know where they are," Doria said. "When I thought the kidney was 45 minutes from the hospital, then I sent the patient to the operating room."

 Jean DeVinney heard about what happened later from members of Jefferson's transplant team. "This person was having second thoughts and had to be reassured. That was the delay," she said. "This makes us all the more fortunate. Everybody had to pull through."

Surgery with DeVinney, eight hours later than expected, went beautifully. Over in 90 minutes.

The kidney is working perfectly. "So he's another man," Doria said.

Sinacore said all five recipients were doing well, although it was still early in their recovery.

Two days after surgery, as DeVinney convalesced in the hospital, his wife was composing thoughts for a letter she planned to send to the altruistic donor who had made it all possible.

"My husband spent his life saving lives," she said, "and now somebody has saved his."

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@michaelvitez