Class for Patients Facilitates Live Kidney Donations

Dorry Segev

With more than 90,000 people on the kidney transplant waiting list, it can take years for an individual to receive a deceased-donor kidney. Because of this, transplant surgeon Dorry Segev encourages patients to find a live kidney donor.

Understandably, patients are overwhelmed by this idea, so Segev designed and launched a pilot program in 2010 showing them how to do it. Since then, roughly 25 to 45 percent of all patients in the program have identified a potential living donor.

The only qualification to participate in the Live Donor Champion Program is to have a live donor champion, someone who is willing to be an advocate for and help the patient through the process of finding a living donor. “It can be difficult to find someone willing to donate a kidney, but it isn’t that difficult to find someone who cares for the patient,” says Segev.

Patients and their live donor champions attend a two-hour class once a month for six months. During this time, participants learn the facts about live kidney donation, how to start a conversation about live kidney donation, and how to identify and access their social networks.

Betsy King, an assistant resident in surgery and manager of the classes, says the champions are ready to go out and start a conversation with people about live donation as soon as the second class is over. “It’s amazing,” she says. “They feel confident to go forth and start talking right away.”

King also says participants are often surprised when they discover all of the people in their social network. “They all brainstorm out loud, listing the groups they know in their community, like their church and volunteer organizations,” she says. “They get ideas from one another and find that their network is larger than they think.”

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Segev and King hope to adapt the program for liver transplant patients and expand the program to other transplant centers around the country.

To refer a patient: 410-955-5045

Video from Dorry Segev

Watch a Q-and-A with Dorry Segev on living kidney donors here.

AN APP FOR THAT

One of the most valuable tools participants get from the Live Donor Champion Program is their own personal stories. Patients write about themselves, how their life has been affected and why they want a transplant. Their champions can then print the stories as handouts, email the stories or make a video of the patient reading the story.

To make the process of writing their stories easier, Johns Hopkins provides a Facebook app to the Live Donor Champion Program participants. Created with liver transplant surgeon Andrew Cameron, the app asks for answers to certain questions and then generates stories in a format that can be posted on Facebook, with links to information about live donation.