MUSC News Center
Groundbreaking mayor gets new kidney
Helen Adams | News Center | December 23, 2014
|Photos by Dawn Brazell|
Julia Nelson, mayor of Manning, South Carolina, got a kidney from a surprising source.
Known as the people’s mayor of Manning, Julia Nelson is used to helping people.
But when she found out her kidney function had dropped to 2 percent, she had to get used to being in the unusual position of asking for help.
“It’s been a little difficult, being on the receiving end of people wanting to give, wanting to do for me. That’s just not natural for me,” Nelson said.
Nelson, who successfully campaigned to become the first female, African-American mayor of her city, had to launch a new campaign to trying to find a kidney donor. Once she did, she would head to the state’s only transplant center at the Medical University of South Carolina.
“When I started this, I’ll be honest – I didn’t think there was anybody out there that loved me enough to try to give me a kidney,” Nelson said.
Her polycystic kidney disease is an inherited disorder, so the donor would have to come from outside her family.
Nelson was afraid her strong personality, the very thing that propelled her from what she called “the other side of the tracks” to the mayor’s office, would keep people from wanting to donate.
She could wait on the national transplant list for a deceased donor, but it could take three to five years to find a match that way. If she could find a living donor, she could get the transplant immediately and possibly avoid dialysis.
Nelson was reluctant to go public, but her nephrologist convinced her she needed to do it.
That’s something that many people who need transplants find difficult, said MUSC transplant surgeon Kenneth Chavin, M.D., Ph.D. He and some colleagues are involved in a program to train people in how to tell their story. Once they do, he said, “more often than not, they’ll find someone who is touched by that and willing to donate.”
MUSC is part of the National Kidney Registry’s living donor program, which enrolls people who are willing to donate a kidney and people who need transplants, then finds compatible pairs using a sophisticated algorithm.
Nelson started telling her story in speeches and on Facebook, and the local newspaper carried reports on her progress.
She struggled to keep her kidneys working as well as they could by going on a strict renal diet. She was surprised to find that she also had to struggle with something else: skepticism.
“Some people thought I didn’t look sick,” Nelson said. “They felt I wasn’t even on the list for a transplant. I’m not sure where that came from. I think that was gossip in the diner.”
Her nephrologist heard about that and decided to appear with the mayor when she spoke about her need for a transplant to erase any doubts.
One woman who heard about the mayor’s quest had just undergone a physical change of her own. Arlene McCloud, an administrative assistant for the Sumter County School District, lost 80 pounds last year. “I did it with a group of friends who wanted to be resilient to whatever comes into our lives,” McCloud said.
McCloud had met the mayor, but didn’t know her well enough to call her a friend.
“I read her story last year on Facebook after Thanksgiving,” McCloud said. “I also saw an article about her in the daily paper. After reading the article, I did some research and looked on MUSC’s website about kidney transplants. I just felt compelled to donate.”
McCloud’s weight loss made her healthy enough to be a good candidate. She was not a perfect match for Nelson, but agreed to donate a kidney in Nelson’s name. It would go to a patient in Indiana. In exchange, a relative of the Indiana patient would give a kidney to Nelson.
“I was amazed that someone I do not know that well is willing to give an organ that’s going to save my life,” Nelson said.
The women checked into MUSC in December 2014 for transplant surgery, visiting each other and growing closer as they prepared for the procedure. Nelson’s best friend Bobby Fleming was also there.
The third-generation mortician has known Nelson since preschool. “She’s an inspiration,” Fleming said. “She has time for everyone. That’s one of our biggest issues – the fact that she does not take enough time for herself.”
“I try to be the mayor for everybody,” Nelson said. “I try not to get involved in cliques or social status or anything like that. Whether it’s a family reunion or cookout, if I’m able to go, I go.”
McCloud and Nelson became the 27th pair involved in MUSC’s Living Donor Program in 2014. Most donors, like McCloud, participated because someone they knew needed their help. Some, however, were Good Samaritan donors who gave their kidneys without knowing who would receive them.
McCloud and Nelson have one good kidney each, and that’s enough, doctors say. A single kidney can enlarge and do the work of two.
McCloud is back home in Sumter now, about a 20-minute drive from Manning. She’s taking it easy while her body heals.
Nelson is home in Manning with her 14-year-old son, recovering as well. She said he’s a good caretaker who got her through the wait for a transplant.
“He has a heart of gold. He brought me the water, the ginger ale and turned the TV channel. He kept me going - the idea that I want to teach him a little bit more, because I want him to be self sufficient.”
Now, he’ll help her heal. So will Fleming, her long-time friend. “We fight like cats and dogs,” Fleming said in an interview before the transplant. “I told her I’m trying to keep you here because I don’t know what I’d do without you.”
The mayor has big plans, including traveling to more conferences, which she couldn’t do while she was waiting for the operation. She also plans to spread the word about the importance of what McCloud and other donors have done.
“I’d like for more people to be aware of the living donor program,” Nelson said. “I’ve always been a donor. It doesn’t make sense to let all of this stuff go in the ground and turn to dust. Give what you can while you’re living and especially once you pass. Give somebody else a good opportunity for a life.”