The Greatest Gift

The encephalopathy that often accompanies late-stage liver disease can make a patient a little loopy, prone to odd behavior and hallucinations—the belief, for instance, that you’re on a beach in Jamaica instead of fighting for your life in a hospital’s intensive-care unit. Kathy Boxmeyer assumed her husband, Don, who was sixty-three at the time, must be suffering from more of the same when he beckoned her to his bedside at The University of Minnesota Medical Center Fairview after learning that his replacement organs were en route by helicopter.

“I figured we were going to have a moment,” recalls Kathy, who met Don in “Mr. Penk’s journalism class” at St. Paul’s Monroe High School when they were teens. “I thought he’d thank me, say how much he loved me and the kids, and say goodbye—you know, just in case, because we didn’t know for sure if he’d even make it.”

“Call Effenberger to see if there were any accidents in Mankato” is what Don said instead, referring to his longtime editor, Don Effenberger, at the Pioneer Press, where he has filed more than 3,500 columns during his long career. “A fifty-something man from southern Minnesota” was the only description the transplant team had offered about the donor whose kidneys, liver, and heart would be parceled out in three separate surgeries, including Boxmeyer’s. Don wanted his newsroom friend to help fill in the rest of the details, searching databases for an obituary or, better yet, an address.

The request that seemed so out of left field a moment earlier was now a sign of how lucid Don really was—and how grateful. Even before he knew whether he would survive what would amount to thirty hours of surgery over two days, says Kathy, “he wanted to know where to send the thank-you note.”

There are, of course, channels that organ recipients can go through to make contact with their donor families. LifeSource, the nonprofit organization that manages organ and tissue donation in Minnesota, the Dakotas, and parts of western Wisconsin, generally sends a form letter to the donor family, providing the barest details of how their loved one’s donations have been used to save or improve a recipient’s life. LifeSource, which facilitates donations from an average of 174 individuals annually, resulting in more than 600 transplants, generally cautions donors and recipients who want to meet to hold off for a year or more. But Boxmeyer, a longtime fisherman and inveterate reporter (“I knew I was in the middle of a great story while it was happening,” he says), couldn’t help but coax the story along, dropping a line about his unknown donor into a column he wrote about his surgery in hopes of hooking a reader who knew more than he did. His story circulated, and days later he received an e-mail. A few months after that, he and Kathy were on their way to a hotel in Mankato.

Waiting for the Boxmeyers in the hotel’s parking lot was the family of Joe Bruender, a fifty-seven-year-old unmarried schoolteacher whose sudden death following a cerebral hemorrhage had forced them to make a decision that Bruender had not documented on his driver’s license or discussed with them. “At the time, you’re quite confused and everything is closing in around you,” says Bruender’s sister, Jan Schaible, who lives in Eagle Lake. “But we knew he was gone, and we figured, why not give someone else a chance? Joe was a good-hearted person, and it seemed right.”

A few years earlier, Jan’s brother-in-law had received a life-saving heart transplant, “so we knew what it would mean to a family,” she says of her brother’s potential donation. Even so, part of her wondered if they’d made the right choice—until that day in Mankato, when her then-eighty-nine-year-old mother, Thora, embraced Boxmeyer. “As soon as we met Don, all of that went away.”

“It was a relief for me,” Don says. “They understood right away that Joe didn’t die because of me—but I’m alive because of Joe.”

The bond between the Boxmeyers and Joe Bruender’s family is exceptional. The Boxmeyers have slipped into a familial relationship with Joe’s kin, making regular trips to visit Thora and joining the others for reunions, once at Joe’s grave. “Don’s like another son,” Jan Schaible explains. Even so, their interest in each other’s well-being suggests something of the intimate, if often anonymous, connections between transplant patients waiting for the gift of life and donor families who have the power to bestow it.

Transplant experts discuss this decision in terms of the “conversion rate”—that is, the likelihood that a family faced with the opportunity to donate the organs and tissues of a loved one who is brain dead will decide to do it. Nationwide, the conversion rate is 69 percent, but in Minnesota it’s 77 percent, one of the highest in the country. Minnesota families’ willingness to say yes may owe something to the fact that organ transplants were pioneered at the University of Minnesota more than four decades ago and we’re familiar with the often positive outcome. It may also have something to do with our sense of community spirit, our “willingness,” says Boxmeyer, “to help out the other guy.” It may even owe something to a kind of Midwestern practicality—similar to the mindset that appreciates the good sense of recycling. “That was one reason we did it,” says Schaible. “Joe didn’t need his body anymore, but maybe someone else did.”

Surveys find that almost all Minnesotans support organ transplants, but when it comes to putting those good intentions on the dotted line fewer than half of us have actually checked the donor box on our driver’s license or signed a donor registry. “It’s a bit of a disconnect between supporting it and taking the next step and documenting those wishes,” says LifeSource CEO Susan Gunderson. It’s a troubling disconnect at that, because the transplant world is about to notch an important milestone.

“Very soon, and for the first time, the list of patients waiting for a transplant is going to go over 100,000,” says Ty Dunn, assistant professor of surgery in the U of M’s transplant division and the surgeon who performed Boxmeyer’s liver operation. Dunn spends her days with patients like Don, negotiating the Catch-22 of transplants—the fact that you need to be sick enough to get to the top of the national transplant priority list, but not so sick that you’re no longer an acceptable risk for surgery, a long recovery period, and a permanent program of posttransplant monitoring. The time a patient waits for a transplant can vary from months to years, depending on the organ needed and the region where a patient lives—and experts report that the wait times are lengthening. There are more than 97,000 patients on the national transplant list, according to the Organ Procurement and Transplant Network, which updates the number several times daily at optn.org. But  just over 13,000 received a transplant from deceased donors between January and July of this year. (Another 3,725 received organs from live donors.) “And the longer [the patients] wait, the sicker they get,” Dunn says. Every day, almost twenty people are estimated to die while waiting for organs.

The reasons for the growing organ demand include an aging population, an increase in diabetes (more than 73,000 Americans are waiting for kidneys), and a transplant success rate that has made it the new standard of care for many patients. Kidney disease patients have better results receiving transplants directly than if they go on dialysis first, says Dunn.

Unfortunately, the supply side—the number of potential donors—hasn’t grown nearly as fast. Better medicine probably means that more patients survive accidents and other traumas that would have resulted in death a decade ago. And in spite of the more than forty years of experience, myths about organ transplants remain. For instance, though the National Organ Transplant Act of 1984 established a national registry for organ matching administered by a private nonprofit organization under federal contract, a 2005 Gallup survey found that nearly half of all Americans believe a rich person is more likely to receive a transplant than a poor person in equal need. Nearly one in five believe donor families incur extra medical expenses, which is also untrue. (There have been proposals to offset the organ shortage by offering families financial incentives, such as the burial expenses provided in some states to people who donate their bodies to medical science.)

Perhaps the most persistent myth—given new life by an especially dopey plot turn on Grey’s Anatomy—suggests that doctors can procure an organ from one patient and deliver it down the hall to another, who happens to be in the right place at the right time. “In spite of our best efforts to work with them, Hollywood usually doesn’t get the story right,” says Gunderson. In reality, the team of doctors who handle organ procurement do not arrive at the donor’s hospital until after efforts to save his or her life have been exhausted. Depending on the time of brain death, there may be a twelve- to twenty-four-hour period during which a donor family can weigh the options before them.

Joe Bruender’s family decided they were comfortable donating his life-saving organs, but not with sharing other organs, such as his eyes. “I don’t know why,” says Schaible. “But it was a choice we were allowed to make on our own, and there was no pressure at all.” She adds that many of Joe’s extended family members and friends have since documented on their driver’s license their own decision to be an organ donor. A new online registry (donatelifemn.org) makes it even simpler for donors to make their choice known. In the year since its inception, more than 4,000 potential donors have signed up.

More than three and a half years after his kidney and liver transplants, Don Boxmeyer makes periodic trips to see his doctors. During that time, he’s had a few setbacks, including infections and two heart surgeries. But now he has an even larger extended family looking after him. “It’s very difficult when Don isn’t doing well because he’s keeping part of Joe alive for us and we don’t want to lose him,” Schaible says.

Boxmeyer understands their worries and takes care to take care of himself. “At some point, I felt an obligation to survive for them as much as for my family,” he explains. “After getting a gift like this, you start living for more than yourself.”

Laura Billings is a St. Paul–based journalist who writes frequently about health.