Daisy Flemming met her husband, Edward, when they were undergraduates at Edinburgh University in Scotland. She didn’t know she had kidney disease until after they married and moved to Los Angeles, where Edward was in graduate school at UCLA. Daisy was diagnosed with IgA nephropathy. Also known as Berger’s disease, it occurs when an antibody called immunoglobulin A (IgA) builds up in your kidneys. The disease usually progresses slowly over many years, decreasing your kidneys’ ability to do their job of filtering wastes and excess water from your blood.
When Daisy was diagnosed, her doctors estimated she would need a transplant in five to ten years. Her disease stayed fairly stable until 1997, when her younger sister passed away. “To deal with the pain, and to replace the life that was lost, I wanted to have a child,” Daisy said. She and Edward had a healthy son in 1998, but pregnancy caused her disease to progress. She stayed at the same kidney function level for five more years, but in 2004 her disease worsened.
“My doctor advised me to start talking to my siblings about the possibility of donating a kidney to me,” Daisy said. Unfortunately, her siblings were unable to donate. Edward was willing, but he was not a match. Even though Edward was not a match for Daisy, in order to still support his wife in receiving a transplant, Edward looked into donating his kidney to a transplant group. Transplant groups attempt to pair donors and recipients to find better matches through paired exchanges. However, they were told that a “swap” with another donor was unlikely since Daisy’s blood was type O. Any donor who was compatible with her would be compatible with any recipient and would not need to look for a swap.
Daisy carried on. In 2010 she and Edward adopted a daughter “conceived in our hearts,” she said. By the end of 2013 her kidney function showed signs of declining yet again. Daisy and Edward learned that paired donor exchange had come a long way since 2004, due to advances in design and the matching process, and they were now candidates for a swap arrangement. Daisy went on dialysis in November 2014, and the wait for a match began.
That’s how Daisy and Edward became part of the longest chain of kidney exchanges to date in the United States! On February 4 of this year, Daisy and Edward were among the 34 kidney transplants that were swapped between 26 different hospitals over the course of three months. Edward donated a kidney to another person so that Daisy could receive one from another donor who was compatible. Daisy and Edward were part of the chain at Brigham & Women’s Hospital in Boston, where she has been under care since they moved to the area. The last day of the multi-state chain, March 26, was featured on ABC News’ “Nightline” on April 14, 2015. Daisy is now off dialysis and doing well, and Edward’s recovery was relatively quick and easy!
Daisy says she is grateful to the donors in the exchange and also to her family, friends and neighbors who stepped up to help while she and Edward were both recovering. “I feel that I am extremely lucky in so many ways,” Daisy said. “To all the donors who participated in the exchange program, I say, ‘Thank you, kind strangers!’ You have made it possible for me to see my two children through adulthood.”
#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.