Even though two decades have passed since John Nelson gave part of his liver to his cousin, Cindy, he still becomes emotional when talking about it. His selfless act became an important part of his personal history, influencing the choices he makes and the causes he supports.
It was an important part of the UW Health Transplant Center’s history, too. John was just the third living liver donor at University Hospital, and the program has gone on to expand and provide even more options for those who want to give the gift of life to others. Truly, over the course of those two decades, UW Health’s living liver donation program has changed dramatically. “I’m very proud to be part of their learning process,” says John, who lives in Jacksonville, Illinois.
Back in 2000, Cindy was suffering from hepatitis C and needed a liver transplant. Initially, she was working with a transplant center in Chicago, but transferred to UW Health in Madison, Wisconsin, after an acquaintance told her of the high-quality program there.
John had read an article about a new option for living liver donation and asked Cindy’s caregivers at UW Health whether he might donate part of his liver to her. At the time, a living liver donation program didn’t exist in Madison, but surgeons there were currently working with their first donor. Cindy likely would have to wait as long as three years for a deceased donor liver, so John kept checking back, and by Christmas of 2000, surgeons at UW Health agreed to test him. He was a match, and they scheduled both his and Cindy’s surgeries for March. The pair would become only the second living liver donation in Madison.
Unfortunately, Cindy was ill the day of their surgery, so they had to reschedule for April 20, 2001, which made John the program’s third living liver donor. “I knew I was a pioneer,” he says. “I had friends who were concerned about the process and wanted to know how many times the surgeons had done this.”
He told his friends what his transplant coordinator told him: His surgeons had removed parts of a liver thousands of times, and they had performed hundreds of transplants. This was just the third time they combined those two processes.
During their recoveries, nurses purposely situated John and Cindy at opposite ends of the transplant floor so they could practice their walking while visiting each other. “It was a wonderful bonding time for us,” says John. “Being able to spend time together helped with both of our recoveries.”
A focus on living donors
While UW Health continued to perform a few living liver transplants over the next several years, it didn’t start focusing on expanding the program until 2010. At that time, the UW Health Liver Program developed a dedicated donor team which would serve only the living donor. When John gave the gift of life, he had the same transplant coordinator as Cindy, but starting in 2010, donors and recipients each had their own coordinators. “We think of our living donors as being our patients and having the same level of priority as any other patient,” says Megan Spina, MSW, LCSW, living donor manager for the UW Health Transplant Center. “We ensure there are very strong boundaries in place that respect the donor’s decision-making process.”
UW Health also started taking steps to make the donation process as easy as possible. For example, the program changed the order in which it was testing potential donors, taking images of their anatomy before proceeding with all the other tests, so they would know right away whether they were eligible to move forward in the process. The program also hired an internal medicine provider who would work exclusively with donors.
Part of the reason caregivers wanted to pay special attention to living donors was because the United Network for Organ Sharing (UNOS) was changing the way it allocated livers from deceased donors. UNOS wanted to make organ sharing more equitable, so livers went to the sickest people — regardless of where they lived in the nation. For states such as Wisconsin, in which the wait time for a liver had been shorter compared with other states, this meant it was much harder to get to the top of the wait list. Thus, living donation would be a quicker option for some transplant patients.
Jaime Myers, RN, MSN, CCTC, clinical director of the UW Health Transplant Center, compares the need for living donors to a pie. “When you don’t have enough pie for everyone, you can change how you give out the pieces, or you can get more pie,” she says. “We need more pie, which in this case is livers.”
Organ donation’s biggest cheerleader
While UW Health has been changing how it serves living liver donors, John has undergone his own journey. Unfortunately, Cindy died about a year and a half after her transplant because of complications with hepatitis C. Complications that, through more time and research, are now avoidable. “It was very difficult,” he says, “because when she died, a part of me died, too. But I’m grateful she was able to live with a clearer mind after her transplant. It truly did help her.”
John became active in the organ donation movement, volunteering for his local organ procurement organization and acting as a living donor advocate. When he trained to become a hospital chaplain, he chose organ donation chaplaincy as his special project. He spent a week on University Hospital’s transplant floor, talking with doctors, nurses and other staff about their lifesaving work.
Now a retired chaplain, he takes every opportunity to talk about the importance of organ donation. “It’s such an incredible gift that you can give another person,” he says.