New Friends for Life After Paired Donor Kidney Exchange

For a few years, Steve Harper had thought about donating a kidney. “I thought it would be a good thing to do,” Steve explains. “And sometimes thinking about doing something makes you feel like a better person and for a time, that was good enough.”

Then one night, Steve, the chief engineer of an ocean-going tugboat, was midway through the night watch in the engine room when he happened to listen to a podcast about Nobel Prize-winning economist Al Roth. Roth won the Nobel Prize in 2012 for his work creating markets for items that have no cash value. Items like kidneys. He was instrumental in creating the mathematical algorithms that resulted in the creation of the National Kidney Registry.

In the late night quiet on the tug, 46-year-old Steve started thinking. He had already achieved his lifelong goal to earn a pilot license, and had been wondering what his next goal should be. Maybe this time, he thought, the goal could be something that wasn’t so self-directed. It also might benefit someone else. It could even save someone’s life. “And that is when it occurred to me what my next goal would be, my next great adventure,” Steve says. “I would donate a kidney.”

“It took almost two years to get my work schedule set up to so I could make this happen,” Steve recalls. “Then there were six months of needle sticking, ultrasounds, MRIs, paperwork, psychological interviews and doctor visits. I got injected, inspected, and finally, selected.” 

Steve became one of four people in a paired donor kidney exchange that took place at Virginia Mason. “A beautiful, courageous, and generous woman named Wendy Johnson pledged her kidney to a stranger so her friend, DC Crist, would be moved to the top of the list,” Steve remembers.

Kidney foursome

Friends for life (left to right): Douglas “DC” Crist, Steve Tucker, Debbie Nayakik and Wendy Johnson

Wendy was not a match for DC, but Steve was. It was decided that Wendy’s kidney would go to her match, Debbie Nayakik, who lives in Utqiagvik, Alaska, the northernmost town in the United States. Before the transplant, both of Debbie’s kidneys were functioning at eight percent. “I prayed each day and night that God would pull me through each day so I was healthy enough to receive a kidney,” Debbie remembers. “Then one evening I got the call that there was a kidney for me.

“I didn’t realize what I was really getting myself into. The doctor told me I couldn’t eat raw whale muktak [outer skin and blubber], which I love. Then it finally soaked in my brain that I needed to do this and I obeyed the rules,” Debbie says. “I was blessed with a healthy kidney, thanks to Wendy. My life has been prolonged so I can see my two grandchildren grow up.”

DC Crist, the second recipient of the paired kidney donation, suffered from polycystic kidney disease. Clusters of cysts had developed in his kidneys and had become enlarged, diminishing kidney function over time. He and Wendy are both interested in civic causes on Bainbridge Island and their paths crossed often. When Wendy learned DC needed a kidney she felt compelled to investigate the donation process and eventually decided to donate.

“[Steve’s] kidney was essentially looking for a home. Thankfully that was me.”
— DC Crist

“Without Wendy donating her kidney on my behalf, I wouldn’t have had anything to trade for Steve’s kidney,” DC says. “I would have been just one of thousands of Americans on the waiting list. Because Wendy’s kidney was donated on my behalf for Debbie and Steve’s kidney was donated altruistically [without expectation], his kidney was essentially looking for a home. Thankfully that was me.”

The transplant team at Virginia Mason has performed more than 1,000 living donor transplants and is well up to the challenge of a paired kidney exchange. Transplant surgeons Nick Cowan, MD, and Jared Brandenberger, MD, operated, first on DC and Steve, then a week later on Wendy and Debbie.

“I felt a thousand times better immediately,” DC recalls.

Because the transplants occurred locally, as opposed to implanting a kidney that had been transported from another facility, the four participants had the unique opportunity to meet each other face to face. “We set up a meeting with DC two days after the surgery,” Steve recalls. “The meeting was great. He looked terrific. His creatinine level was lower than mine. We found that we had a lot in common. We are both sailors, we both play guitar and we both have amazing life partners.”

All four paired exchange partners eventually met. “I traded a kidney for three new friends.” Steve adds, “Good trade.”

Steve has a heartfelt message for the care team that performed the transplants: “There is no way for me to express my respect and admiration for the incredibly smart, dedicated, well-trained people who make miracles like this possible. Thank you, from the bottom of my heart, for studying so much harder in college than I ever did. You are the true heroes of this story.”

What is Living Donation?

Almost every day, someone calls the Kidney Donor Information Line to ask about donating a kidney. The reasons are as varied: they have a friend or family member who needs a kidney, they heard about someone who is waiting for a transplant on Facebook or the news, or they “have two and want to give one.” Some people even step forward to donate with no particular transplant candidate in mind.

Why would you donate a kidney?

“Until the day I found out my friend’s 20-year-old daughter needed a kidney transplant, I had never thought about kidney donation,” recalls Lori Heimbichner. “That day I witnessed a mother’s despair and in an instant knew I needed to at least try to do something to help.”

Lori Heimbichner donated a kidney as part of a paired exchange

Lori Heimbichner donated a kidney as part of a paired exchange.

Lori’s kidney donation adventure ended not with donating to her friend’s daughter, but to a stranger who needed a kidney. Her friend’s daughter received a kidney from a younger anonymous donor. Donors who are unable to donate to their intended recipient may donate as part of a paired exchange. They donate to an anonymous recipient, in exchange for their recipient receiving a kidney from an anonymous donor.

It was not easy to make the decision to donate to someone she didn’t know in exchange for her friend’s daughter receiving a kidney. But ultimately Lori decided, “We are all connected by the same kind of love and in the big picture we all matter to one another.”

As a result, two transplants occurred and many people’s lives were changed for the better. Lori says, “I suspect that donating a kidney is akin to the miracle of giving birth/giving life. Kidney disease is a disease that those of us who are healthy can do something about. As someone who has donated, believe me when I say that being able to give the gift is the real gift.”

Who can donate?

Donors must be healthy, willing to donate without pressure, be blood type compatible and have a negative lymphocyte crossmatch with their intended recipient.

LivingDonationSidebarBlood tests are done with the blood of the recipient and donors. This is called lymphocyte crossmatching and can be done on multiple potential donors at a time. In this blood test, the donor’s blood cells are tested against the recipient’s to determine if the recipient has any previously formed sensitivity to that donor.

When there is a reaction between the cells, and the kidney would be rapidly rejected without aggressive desensitization, this is called a “positive crossmatch,” and in most cases another donor must be found.

No reaction between the cells is a “negative crossmatch,” meaning a transplant can safely take place. Once that negative crossmatch has been done, one donor is selected for medical evaluation. If this person is found to be a suitable donor from a medical, surgical and psychosocial standpoint, the operation is scheduled and a date is set for the transplant. This is preceded by a final preoperative evaluation the day before surgery.

Donors who are unable to donate to their intended recipient may donate as part of a paired exchange.

What you get out of donating.

Since her experience, Lori has returned to the full life she enjoyed prior to donating. She believes that her life has been exponentially enriched by being able to give a kidney. We are so very grateful to Lori as well as the generosity of all our donors who step forward to give the ultimate gift. In 2012, 34 people received living donor transplants at Virginia Mason and many lives beyond those individual patients were touched.

Heartfelt thanks go out to every person who has considered kidney donation.

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Guest blogger Valorie Evanyo-Weaver is a transplant office assistant at VM and has been a member of the team for 2.5 years. She is currently training for a Disneyland event occurring Labor Day weekend that involves a 10K on Saturday, followed by a 1/2 marathon on Sunday.

Transplant Center’s Mary Mason Retiring

Retirement for Mary Mason is hardly an ending. In fact, the first Monday after celebrating the occasion with colleagues, she’ll be on the road with a good friend, a well-equipped camper and new territory to cover. Her decision to retire from her position as a social worker on VM’s transplant team came from knowing it was simply time to move on. “There won’t be any problem finding enough to do,” says Mary.

Mary Mason, social worker and donor advocate, is retiring from Virginia Mason.

Mary Mason, social worker and donor advocate, is retiring from Virginia Mason.

Her career at Virginia Mason began in 2001, but she became familiar with the medical center much earlier. Besides being born at VM, her father, James Tate Mason, MD, practiced urology here until 1978. His father and Mary’s grandfather, the first James Tate Mason, MD, co-founded Virginia Mason Hospital in 1920 along with John Blackford, MD.

Dr. Mason, Mary’s father, practiced during the 1950s when single patient kidney dialysis machines weighed a half ton, and it took an even bigger machine, called the “monster,” to treat more than one patient at a time. Since demand for dialysis far exceeded capacity, an anonymous patient selection committee was composed of local residents and two physicians: one of whom was Mary’s father. It was the country’s first bioethics committee, and it would serve as a model to help shape the accessibility of health care on a national level.

Though her father never talked about his experiences on the confidential committee, it was an important learning opportunity for Mary. “I was aware of the ethics of what my father was doing from a very young age,” says Mary. The seeds were planted for what would become an attraction to the discipline of social work, and eventually Mary took a position at the Northwest Kidney Center. She had worked with dialysis patients for 12 years when the single transplant social worker position at VM opened up (today the Transplant Center employs three social workers). When Mary started, she worked with both kidney donors and recipients, but the practice would evolve to recognize both patient types needed their own advocate. Mary worked with the donors.

“The first step for anyone considering donation is education, even before they know if they’re a match,” says Mary. “It has to be their own decision because it affects every part of their life. It’s essential to have the support of those close to them.”

One reason Mary looks forward to retiring is her own close-knit family. Their support helped Mary make the decision in 2004 to become a kidney donor herself. She chose to donate her kidney to a recipient she didn’t know on the national transplant list. It’s extremely rare for someone on the list to receive a kidney from an anonymous live donor – 98 percent of live kidney donations (which typically last many years longer than kidneys from deceased donors) are connected somehow to the recipient.

Unexpectedly, Mary came to know her recipient, at first through the cards he still sends to her on every holiday. They met in person once when Mary was traveling in Eastern Washington. For Mary, the experience deepened her connection to her patients. “I have walked in their footsteps,” she says.

Ready to leave her clinical life, Mary looks forward to more travel and spending time with her husband, her two adult children and four grandchildren, her sisters, brothers and a lively contingent of nieces and nephews. “Having time with family is really important to me,” says Mary. “They are a big part of my upcoming plans.”

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A version of this article was originally published on VM’s internal news site.