Putting Jack on the deceased donor list was an option, but not a good one, and not just because 100,000 people were already on the list. “In every case, a living donor is preferred—the outcomes are far superior,” Verghese says. “The most obvious reason is that a kidney with warm blood pumping through it is put almost directly into the patient’s body, but with a deceased kidney it is quite a number of hours on ice before it goes to transplant.”
Even at a world-class medical institution like the U of M hospitals, the kidney donor program receives and tests potential donors; it doesn’t find them. That’s the family’s job. It was time to network. “When we realized it was up to us, that was a game changer,” Ali says. The family started telling everyone they knew.
As word spread, phone calls from type O donors started pouring in to the Transplant Center. “Two hundred people called for Jack,” says transplant coordinator Marie Cook. “It was a full-time job.” Every potential donor was screened and their blood put through a cross match, in which the medical center mixes their blood cells with the recipient’s to see if they react. This tells the doctors whether a recipient’s body can accept the kidney. “We reviewed Jack’s case every week to come up with a match, and every time we thought we were close, there would be an issue,” Cook says.
A match could come from anywhere. More than 1,000 children have received a kidney transplant at the U of M. More than half of those are from living donors—from friends, family members, directed donors who call in to donate to a specific person, and non-directed donors who call in to donate to anyone who needs one.
“The outcomes are fabulous for both the children and their donors,” Verghese says. “If people only knew the difference they could make, I know more people would do it.” There are 15 children like Jack currently waiting for donations at Amplatz. More than 8,000 successful kidney transplants, 1,000 of those in children, have been performed at the transplant center where Verghese works. The center celebrated that fact on its 50th anniversary on October 18, which also happens to be my sister Mekea’s birthday.
My little sister Mekea entered the world on October 18, 1977, with an innate “sweetness” that became my dad’s nickname for her and her steady demeanor. My parents remember her as a toddler who barely made a peep when she skinned a knee or bonked her head. Once when she was strapped into our mother’s bike seat, I watched as the whole thing tipped over onto the front lawn. She lay there on her side, unruffled, a look of bewilderment in her eyes, but no tears.
In college, Mekea chose the teaching profession on instinct. As a student at the University of Wisconsin-Madison, she watched a group of school-aged kids walk through the union and was overcome by the feeling that she was meant to be a teacher. She taught second grade for several years before taking time off to have her own three daughters: Grace, Frances, and Mary Ruth.
She acted on a similar instinct the day she dialed the transplant center. After the initial screening over the phone and lots of paperwork on her medical history and blood type, she completed a tissue typing test by swabbing the inside of her cheeks with a buccal swab that would be enough of a sample for the immunology team to cross match her antigens with Jack’s.
It didn’t take long for her to get a call back. “They said, ‘You’re a good match. Are you serious about moving forward with this?’ ” Mekea says. “At this point, I knew I would be. I think I had known it long before. I imagined my child waiting on a stranger for help and hoping somebody would feel the same instinct I did. Kind of like watching a child run into the street and knowing you could get yourself killed, but you would still run after them, wouldn’t you?”
Transplant coordinator Anne Lecuyer-Koich met Mekea in May 2013 when she came in with her husband for a full evaluation. “Only the crème de la crème make it through,” says Lecuyer-Koich, who was solely dedicated to handling Mekea’s case. As is standard practice, her case was kept confidential and completely separate from Jack’s to prevent conflicts of interest. Mekea had her own transplant team; Jack had his. Mekea met with Lecuyer-Koich, the doctors, and a social worker. She underwent an EKG, a chest X-ray, blood tests, urine tests, and a psych evaluation. She was given information about the surgery, recovery, and short- and long-term effects.
Mekea was about as close to a perfect match for Jack as you can get, and she passed the tests. Now she wanted to talk it through with her family. Mekea and her husband, Tim, gathered us in my parents’ living room and explained what she had learned in the evaluation: Research shows that living donors live a normal life expectancy without more risk than the average person, and since kidneys are now extracted laparoscopically, there would be minimum scarring and recovery, and she’d likely be back to normal in two to six weeks. Her remaining kidney would grow to compensate for the missing one.
A comprehensive U of M study in 2009 that tracked donors all the way back to 1963 revealed that the risk of kidney failure is much lower than what is observed in the general population, and the chances were slim to none that Mekea or her daughters would ever need her other kidney. Donors live as long if not longer than average, and this is partly because donors must pass strict selection criteria before they’re allowed to donate—their general good health pays off, as does the psychological boon that comes from their altruistic act.
We hashed it out and asked Mekea our questions. There were tears when we talked about the magnitude of her decision—the possible risks that surgery entails.
"There is always a risk to surgery,” Lecuyer-Koich says. “The biggest risk is that you could die. You could also die getting hit by a car, but you have to go home today, don’t you? You don’t have to come here and give a kidney.”
My dad put it this way: “Let’s say you were the only one in the world who could donate to Jack. Then the decision would be clear. But why does it have to be you?”
Mekea answered, “Why not me?”