Researchers, patients go one-on-one to encourage organ donation
By Allyson Bird
Office of Development and Alumni Affairs
Every now and then local television host Everett German gets a request to speak with a stranger in need of a kidney.
German calls, answers questions, even visits hospital rooms. He talks about years traveling as an announcer with the College of Charleston basketball team, lugging a 25-pound dialysis machine on road trips and calling ahead for solution deliveries to his hotel.
“They want to know, ‘Is it painful?’” he said. “I tell them, ‘Not compared to what you’re dealing with now.’”
German received a kidney transplant from his sister three years ago. Since then, and given his experience hosting the Comcast sports show “The Red Zone,” he has become an unofficial spokesman for MUSC’s Live Organ Video Educated Donors (LOVED) program. LOVED first studied cultural barriers and misconceptions about organ donation, particularly in the black community. The program then trained trusted leaders to educate patients and potential donors. Now in its 11th year of federal funding from the National Institutes of Health, LOVED uses smart phones and iPads to connect patients and donors with people who have been through similar experiences.
South Carolina ranks third in the country for end-stage renal disease, according to Dr. Prabhakar Baliga, director of MUSC’s transplant program. Nearly 65 percent of those patients are black, but fewer than 20 percent of patients on the waiting list for new kidneys ever get the transplants that they need. Black donors make up only about 15 percent of living donations nationally, Baliga said.
“There’s a large discrepancy, and deceased donations can’t make up the gap,” he said. “There’s a huge opportunity to understand why, in South Carolina and in the black community, there is such a low rate of donation.”
German said one of his college roommates also needed a kidney transplant, and the man's two brothers refused to get tested to see if they matched. That roommate waited on a list for a kidney from a stranger, a situation that German hopes to see less frequently by educating people.
“It’s all about my experience and giving back,” he said. “If there’s any way I can make time to help, I’m going to do it.”
German found out that his kidneys were failing him 10 years ago, after going to see an optometrist for headaches and blurred vision. He figured he just needed glasses.
The optometrist told him on that Friday afternoon that German could see just fine but that he might need to get his blood pressure checked. With only a few hours before he planned to leave to see his sister in Florida, he headed over to MUSC for some blood work.
A nurse checked the reading on his blood pressure cuff, looked puzzled and then retrieved another cuff. She called in a second nurse. Finally, they brought in a doctor.
“He told me, ‘You are a walking stroke,’” German remembered. “He said, ‘You could be driving and kill yourself or other people. I literally can’t let you leave.’” The doctor admitted him to the hospital.
The only upside, according to German, was that he could watch March Madness basketball games on television. The bad news was that each of his kidneys was functioning at about 6 percent.
He went in for regular checkups and cut out fried and salty foods. In June of 2009, his kidney function dropped to 4 percent each. German started in-home dialysis.
He typed up a group email to his family that same day and, within 10 minutes of sending it, his two sisters, his sister-in-law and his brother-in-law all had volunteered to donate a kidney. This summer marked the third anniversary of German’s transplant.
“I’m kind of the poster child for kidney transplant, because I’ve had no issues at all,” he said. “It really was a journey that I wasn’t embarrassed of, and things happen for a reason. I guess I was meant to share this message.”
Professor of Nursing and Medicine Dr. Frank Treiber said 95 percent of donors and recipients already use cell phones, and half of those donors and recipients use smart phones. The LOVED program educates them right in their homes. Post-doctoral scholar John Sieverdes said the LOVED program makes the organ donation experience feel less clinical and more personal.
“It isn’t somebody in an academic building saying what you’re supposed to do,” Sieverdes said. “It’s a real partnership between the medical community and patients to help people in need of transplants.”
Even when he doesn’t have a patient to counsel, German visits the longshoremen’s halls, churches and schools to talk about organ donation and healthy eating.
“Instead of being a consultant,” German said, “I’m just being a friend.”