Jeannette Muhl really wanted to figure this out. The kidney donors and recipients were split between two floors. Though the staff wasn’t allowed to say who was who, Muhl was hopeful. Before her surgery, Muhl and her sister snuck around the hospital hallways, trying to match patients with descriptives like “sister” or “husband.” They just had to know who else was part of this crazy whirlwind.
Muhl was one of eight people who participated in a kidney transplant chain undertaken over two days at UPMC Montefiore in April. Transplant chains begin when an altruistic donor offers up a kidney to someone who has a relative willing to donate, but is not a match. The relative of the recipient then donates to another patient in the same circumstance, and so on.
In accordance with privacy protocols, donors and recipients usually remain anonymous. But, in a first for UPMC, all eight participants agreed to go public with their identities and, along with their families and members of the UPMC staff, met in June—which Muhl did not know would happen when she was doing her hallway reconnaissance.
Transplant chains usually span multiple states and hospitals; this particular chain involved people from the Pittsburgh region—another first.
“It takes everyone from the OR staff to the nurses to the coordinators to the HLA [human leukocyte antigen] Lab, even the administrators,” says Amit Tevar, surgical director of Kidney and Pancreas Transplantation at UPMC and associate professor of surgery. “To have four ORs reserved all day long for a transplant two days in a row is a significant amount of block time. And to make that happen, it does take a village.”
To be considered for either end of a donation, potential patients go through a long series of evaluations (including standard health, nutrition, and psychological assessments) and so much blood work that Muhl said she lost count after the 45th vial. Blood is used for discerning blood type, HLA antigens, and panel reactive antibodies. Doctors perform up to 15 tests in order to predict whether the donor kidney will be rejected by the recipient. All that work had to be done eight times over in order to bring together—and help ensure the success of—the entire chain.
Andrew Rose started the chain as the altruistic donor to Eric Welch. (Rose, more or less, woke up one morning and wondered if he could donate a kidney to someone.) Welch’s sister, Allison Zacharias, donated to Brooke Conley, whose husband, Brandon, donated to James Weiss, Muhl’s nephew. Muhl was the final donor, and the chain ended with Louis Sorbo, who had been on the cadaveric donor list for the previous three years.
After three years of dialysis, Sorbo received a call from a transplant coordinator that he could be the final recipient in the chain. It was two days before his 24th birthday.
“I thought she was joking, because it was April Fool’s,” says Sorbo. But that would have been a lousy joke.
“It was so hard to wrap my head around.”
When he was 20, Sorbo came down with what presented as the flu but later was revealed to be reflux in his bladder. The backed-up urine had reduced his kidneys to the size of an infant’s; suddenly, they couldn’t do the work required to sustain an adult. “And then Jeannette comes along,” he says.
When they were introduced at the meet-up, Muhl embraced “my little Louis,” as she calls him. He refers to her as his Earth angel, and the two occasionally check in. Muhl says that when she celebrated her 50th, Sorbo wished her a happy birthday from her kidney.
“It does touch you,” says Tevar, who then adds, joking, “even ... surgeons.”
Muhl was a willing donor, but not a match, for her nephew, who was 35 and had a 3-year- old boy.
“I lost a son four years ago,” Muhl says. “I couldn’t imagine my sister going through that.” Then Muhl heard that she could donate to someone else in need and perhaps help her sister’s family.
The first kidney transplant chain in the United States was performed in 2005 at Johns Hopkins; UPMC’s first was in 2011. While the average chain involves six transplants, the largest—also in 2011—involved 60 people and 17 hospitals and took four months.
According to Tevar, living-donor kidneys “work longer, better, and faster.” The U.S. Department of Health and Human Services reports that, as of August, more than 104,000 people are registered as potential recipients in this country; 874 of those are UPMC patients. In the first half of 2013, UPMC performed 81 kidney transplants, including 43 living-donor procedures.
As the patients from the chain—recipients and donors alike—moved on with their lives, Sorbo took his new kidney, as well as his degree in political science, and made a literal move to Connecticut. He’d landed a new job aiding in the implementation of the Affordable Care Act.
“He’s a genius,” says Muhl. Friends and family see a future in politics for Sorbo. Someday, says Muhl, “My kidney is going to the White House!”
Editor’s Note: Patients in this story all gave UPMC express permission to share their identities.