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Connected by the Heart and Kidney

Ellen Blum with her half-sister and donor, Amanda BarclayWhile Amanda Barclay’s half-sister Ellen Blum is nine years older than her, they always have been extremely close. When Ellen was a young adult, she frequently invited the adolescent Amanda to spend the night at her apartment, and Ellen became Amanda’s confidant.

 

So when Ellen became ill with kidney disease in 2012, it was only natural that Amanda would volunteer to donate a kidney to her — especially since she already knew they had the same blood type. She immediately called Ellen’s transplant coordinator at University Hospital and asked to be tested.

 

The problem was, Amanda, now 52, has relapsing remitting multiple sclerosis (MS), a neurological disease. The transplant coordinator told her the MS precluded her from donating a kidney, because having only one kidney potentially could worsen her condition.

 

But Amanda wouldn’t give up — over the next two years, she called Ellen’s coordinator every six months to see if she would change her mind. By August 2014, Ellen had become very sick, and Amanda called the coordinator yet again to beg for a chance to be tested. Her timing was perfect, because Ellen’s transplant team had just met and decided to reconsider its decision to exclude Amanda from donating before testing her.

 

It turned out that Amanda was a perfect match, and the team could see how little her MS affected her life.

 

“They didn’t see someone who was struggling to walk and having issues with strength,” says Amanda.

 

Additionally, Amanda’s neurologist wrote a letter of support stating that he felt donating a kidney would not impact her health.

 

As Amanda went through the testing process, she didn’t tell her sister because she didn’t want to get her hopes up. After learning she had been cleared for donation, she traveled from her home in Oak Lawn, Illinois, to visit her sister in Baraboo, Wisconsin. During the visit, she tossed two folded pieces of paper on the table in front of Ellen and her husband, Steve. They opened the pieces, which said, “Game,” “Set,” and then Amanda revealed her t-shirt, which read, “Match.” On the back of Amanda’s shirt — which her adult daughter had made for her — read the words, “Side by side or miles apart, we are sisters, connected by the heart … & kidney.”

 

The sisters had their surgery on April 29, 2015, and both recovered well.

 

“I sometimes forget that we even did the transplant,” says Amanda. “I don’t miss the kidney at all. Donating a kidney to my sister is one of the things I am most proud of.”