Christine Hargis had given up hope this spring that her mother would ever get the kidney transplant she needed.
Hargis, of Coello, Ill., and her mother were caught in the frustration and anguish shared by 80,081 other families on the national waiting list for a kidney.
"We'd been trying for almost two years. I match my mother and my antibodies were too high," Hargis said. "It kind of burst my bubble. I thought there was no hope, and then the doctors said, 'Well, there's this other program...'"
The program they were talking about was a chain of kidney swaps arranged by doctors at The Johns Hopkins Hospital in Baltimore after an altruistic donor in Baltimore decided to give a kidney to a stranger. The doctors decided to try to extend the gift by giving the donated kidney to a person who had a family member or friend willing to donate a kidney, and to give that kidney to another person who likewise had someone close to them willing to donate, and so on.
She signed up for the program, and just two weeks later Hargis got a call from her surgeon at Barnes-Jewish Hospital in St. Louis, who she said told her, "We're going to make medical history."
Hargis, 36, was the last donor in a 16-person, four-hospital, cross-country domino kidney swap that constituted the largest kidney donation chain on record.
It started with Thomas Koontz, the donor in Baltimore, whose kidney went to Mu Cha Leffler, a patient in the same situation as Hargis's mother. She needed a kidney and had a loved one who was willing to donate but who didn't make a good match.
A total of eight people in need at The Johns Hopkins Hospital, the Barnes-Jewish Hospital in St. Louis, INTEGRIS Baptist Medical Center in Oklahoma City and Henry Ford Hospital in Detroit received kidneys between June 15 and July 6.
Hargis's mother had the opportunity to speak with her kidney donor, 55-year-old Pamela Paulk, over the phone.
"It's surreal, it's like being in a 'Star Trek' program. Here I am standing and they took my kidney out two weeks ago," Paulk said.
Paulk had wanted to donate a kidney for years after watching the procedure at the Johns Hopkins Hospital where she works as the vice president of Human Resources. Then one day her friend Robert Imes, who also worked at Johns Hopkins as a painter, happened to mention he was in need of a kidney.
Paulk wasn't a match, so they were entered in Johns Hopkins' database of living donors willing to do kidney swaps.
The Advantage of Kidney Donation Chains
"I have not stopped smiling," Paulk said. "I did great. I had no problems. It's just the most wonderful thing to happen to me to be able to do this."
Doctors involved with the transplant chain say the grand orchestration shows the lengths people will go to, to get past the current barriers of kidney donation.
"Donation is so important that we are willing to go to these lengths," said Dr. Lauren Malinzak, a Henry Ford Hospital transplant surgeon who completed a transplant from a kidney flown in from Baltimore.
"Waiting for a kidney is the biggest obstacle to transplants," she said.
Malinzak explained that even when a person in need has several willing donors with the same blood type, a variety of health problems can blow the donation.
"We do turn down a number of donors," Malinzak said. "The most common reasons why we turn down donors is for their own health because they're obese, or they have hypertension, or they have diabetes."
Other people are turned down because they are not "tissue matches," meaning for one reason or another their immune system has built up too many antibodies that will cause rejection in a later transplant.
"It's hard to get a good number of the people who are willing but don't match, because some people already know that they're obese, or that they have the wrong blood type and don't come forward," Malinzak said
At the moment, the majority of families without a match must wait on the national kidney transplant waiting list for a diseased kidney donor. As Hargis knows, the time on dialysis can be grueling and dangerous. Last year, 4,505 people died on traditional lists waiting for a kidney, according to the United Network for Organ Sharing.
"Mom was on dialysis for three to four hours a day, three days a week. My poor dad, he worked second shift so he was coming home and sleeping one to two hours and taking my mom to dialysis," Hargis said. "I'm glad he'll be getting some sleep now."
Dr. Robert Montgomery, director of the Transplant Center at Johns Hopkins Hospital, said the wait for a kidney has only gotten longer as the number of people suffering renal failure from high blood pressure or diabetes grows.
"There hasn't been much increase in the willingness of people to donate their organs after they die -- that's been a flat line -- and at the same time there's been an exponential increase in the need for kidneys," Montgomery said.
The idea of kidney swaps has circulated for decades as a way to decrease this wait, but in 2004, Montgomery said, doctors at Johns Hopkins published an article outlining the idea of the extended kidney donor chain.
"Right about 2000-2001 started to get these people calling our transplant centers saying 'I'm healthy, I have two kidneys, I only need one, I don't know anyone who needs one and I'm willing to donate,'" Montgomery said.
Then specialists at Johns Hopkins had the idea to start a chain with these altruistic living donors.
"The chain is always initiated by a donor who doesn't have a recipient," Montgomery said. "Then at the end of the chain we have a left-over kidney."
Closing the Gap in Kidney Donation Waiting Lists
That left-over kidney "closes the chain" and goes to someone on the national waiting list who doesn't have willing donor to continue the line.
While doctors can increase the odds of getting people kidneys by including more links in the chain, the extended surgeries can come with complications -- the logistics of booking multiple operation theatres for surgeries, flights with kidneys that have a 24-36 hour time limit once they're out of the body, and overcoming unforeseen snags.
"What can happen in these paired donations is if one person along the way backs out, or gets sick and can't undergo transplant, then the whole chain needs to be reorganized," Malinzak said.
To increase the odds and decrease the complications, the United Network for Organ Sharing (UNOS) has teamed up with Johns Hopkins to develop a national registry for living kidney donation swaps.
"The more pairs you have in the system, the more likely you are to get a match, and that's why we need a national system," said Elizabeth Sleeman, a policy analyst and liaison to the kidney pair donation workgroup at UNOS.
Sleeman said UNOS is limiting the swaps to two- or three-way matches when the database launches in 2010. Montgomery estimates the potential for kidney transplants with the new database could save many lives.
"If we were able to have all the patients in the country who have incompatible donors enter into a pool, then we could do an additional 1,500 transplants a year," Montgomery said. "That is a 25 percent increase over what we currently do."