Washington University program spurs living kidney donations
This article first appeared in the St. Louis Beacon, Dec. 13, 2011 - Lance Martin was born with Type 1 diabetes. As he got older, complications started to affect his quality of life, and his kidney function decreased.
By 1996, "I was really very sick," Martin said. It became clear that end-stage renal disease was not far off. But Martin was determined to get well again.
"My wife and I believed that education was power," he said. "We wanted to know all the options ... gather as much information as possible." Martin talked to his diabetes doctor and kidney doctor to get information and attended a transplant education class with his wife, Kim.
Three years later, Kim gave Lance the best Valentine's Day gift ever by becoming a living donor. A surgeon transplanted one of her kidneys into Lance and his life turned around overnight. "You just can't know what it was like unless you experienced it," Martin said.
Now the Martins are sharing that experience with others in the kidney department at Barnes-Jewish Hospital. They are part of a broad effort to encourage living donations that is paying off here and around the nation. An educational program called Explore Transplant, founded in St. Louis, is a key ingredient. Dr. Amy Waterman, an assistant professor of medicine, started the program in 2005, and it is now being used at transplant centers in 27 states.
At the Barnes Transplant Center, Waterman saw a 20 percent increase in patients taking steps to find a living donor, a 30 percent increase in patients sharing transplant information with potential living donors and a 13 percent increase in the number of patients beginning the transplant evaluation process.
Educating patients, their families and friends about living donations is a critical tool in extending the lives of people dealing with renal failure.
Demand Exceeds Supply
A kidney transplant gains patients between six and 14 years of additional life over dialysis, improves quality of life, and saves Medicare around $50,000 a year, per patient, according to the United States Renal Data System.
Demand exceeds supply. Recent figures show 112,793 people awaiting a kidney transplant in the United States, according to the Organ Procurement and Transplantation Network. Each year around 16,800 patients receive a transplant, but more than 34,000 are added to the waiting list. In Missouri alone, 1,229 people are awaiting a kidney so far this year, while only 234 kidney transplants have been performed.
Living donation is a major tool to meet these increasing needs. For every person who, like Martin, benefits from a living donor transplant, one more kidney is available for someone on the waiting list.
For Martin, the transplant worked wonders almost immediately. He was able to start working again within two or three weeks. And two years after his transplant, Lance and Kim started a family. "Megan is 10 now, and she is a daily reminder of what would not have been possible if I had not had the transplant," Martin said.
As well as shortening the wait time for those awaiting deceased donor kidneys, living donation has better results for the recipient, says Brady Landgren, a transplant nurse at Barnes-Jewish Hospital. A kidney transplanted straight from living donor to recipient is in better condition than one that has to be stored and transported, which means that it is less likely to be rejected by the recipient's body, functions better and tends to last between five and 10 years longer. "It makes a lot of difference to the quality of the kidney that you get," Landgren said.
The benefits are clear. But many patients are not aware of these benefits, or even that living donor transplant is an option for them. Many are concerned about harming or inconveniencing the donor, and do not realize that the donor might also benefit. "You don't want to put someone through it," Martin said. "Of course you think about the sacrifice they would be making and about their surgery and recovery time."
In fact, research shows that living donors are no more likely than others to experience kidney problems later in life. "The remaining kidney enlarges over a period of six to 12 months after surgery to compensate for the missing kidney," said Dr. Anitha Vijayan, transplant nephrologist at Barnes-Jewish Hospital.
Joel Newman is assistant director of communications at the United Network for Organ Sharing, the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government. He said living donors are given special care to ensure they remain healthy. "While, as with any surgery, there are risks to living donation, transplant professionals do their utmost to minimize risks through evaluation before the transplant and following up with the donor afterward," he said.
Emily Schenk, a St. Louisan who donated a kidney to her 3-year-old daughter 11 years ago, says that far from having any health problems she is "healthier now, because I realize how precious health is, and how important it is to take care of myself." Additionally, many say the joy of seeing the recipient's life turn around overnight tends to far outweigh any negative aspect of donating. Emily says that being able to donate "was one of the best gifts I ever received."
Step By Step
Clearing up misconceptions about living transplants is a challenge that Waterman embraced when she started Explore Transplant. This individually tailored program can provide patients with the education they need to make an informed decision about whether to get a living donor transplant. Waterman pointed out that the program does not promote living donation; it is called Explore Transplant, not Get a Living Donor Transplant.
"The program is presented while patients receive their dialysis treatment," Waterman explained. "Patients watch videos in which real-life kidney recipients and their living donors share their experiences of life before transplant, the surgery, finding a living donor, and life after transplant. The educator presents the risks and benefits of transplant and living donation, and helps a patient think through what life would be like if he was a kidney recipient or involved as a living donor."
The patient then decides on a course -- staying on dialysis, getting on the transplant waiting list, or pursuing living donation. "The key is to take it one small step at a time and honor how ready the patient is to explore these options," Waterman said. "If the patient is not ready for a step, talking about it will not help."
Waterman's team also trains dialysis providers to deliver the program and provides them with educational materials to share with patients. "Most dialysis providers are busy and not trained in how to educate patients about transplant," she said "We hope that Explore Transplant helps improve the education that patients receive in dialysis centers."
Marianne Wilson, a DaVita Dialysis social worker who has used the program for 18 months to educate her patients, said it has filled an important need. "Before there was a gap in terms of patient education," she said. "People tended not to consider transplant because they didn't have the information. They don't know enough about it, the idea's kinda scary.
"We've had a whole lot more people get interested and several people get listed, who weren't interested before, directly as a result of using Explore Transplant," Wilson added. "We've had one or two transplanted already as a direct result of Explore Transplant."
Making The Ask
If a patient chooses to pursue living donation, obstacles remain. One of the most difficult steps is actually asking somebody to be a living donor, Wilson said. "Patients will say 'I can't ask anyone for their kidney.' I tell them 'Well, don't ask directly. Just tell them you're being evaluated. Maybe someone will step forward.'"
Explore Transplant provides materials for patients to share with family and friends, as a way to open the discussion. "The DVD is quite moving," Wilson said. "I get emotional when I watch it. It has success stories. It gives patients a reality to look at, that transplant is possible, and the potential impact of getting a transplant. It also lets them see why people want to donate a kidney."
While Waterman is pleased with the results from Explore Transplant, she won't be satisfied until every patient is receiving adequate education about living donation. "I am always looking to the future. How can we make the program even more beneficial for educators and patients? How can we reach more people?"
Lance Martin, too, is doing what he can to help others make that difficult decision. He and his wife visit the kidney department at Barnes to tell their story. "If I can help one person make a decision that changes their life, then it's all worthwhile."
Melanie McCabe holds a doctoral degree from Oxford University and recently completed a postdoctoral research fellowship with Amy Waterman in the School of Medicine at Washington University.