'Chain' kidney donation helps York woman get her life back
Lisa Blum was a personal trainer. She had been a Division 1 athlete at University of Maryland College Park and had always kept herself in shape.
The York City woman knew her kidneys could be an issue someday, but she didn’t expect polycystic kidney disease taking over her life in her 40s. She was 41 when she was diagnosed with the genetic disorder.
“It’s typically a later-in-life thing,” Lisa said. “It wasn’t even on my radar. My mom has the disease. My grandmother had the disease. My brother and I both got it.”
Polycystic kidney disease, or PKD, occurs in anywhere from one in 400 to one in 1,000 people, according to the National Institute of Diabetes and Digestive and Kidney Diseases. Thursday is World Kidney Day, a part of National Kidney Month.
Finding doctors: Thanksgiving 2013 started the testing process, after Lisa got mono. The strain on her immune system allowed the PKD to take over. She knew the treatment would be a transplant, the same thing her mother and grandmother had gone through.
The family spent weeks getting tests done at University of Maryland, one of the top transplant hospitals in the nation. However, Lisa’s husband, Jon, said they felt more like a number than people.
“We kept hearing about Pinnacle (Health) from people we’d talk to,” Jon said. “They’d say, ‘My dad or my brother got a kidney transplant there.’ We went to Pinnacle, and we kept saying how awesome it was. You aren’t just a number there.”
He added it was great there was something right up the road in Harrisburg that does such personal care, especially when it comes to transplants.
Jon wanted nothing more than to get his wife back to full health. He was determined to see her thriving like she one had, and he would stop at nothing to help her.
Jon was tested to see if he was a match for Lisa, even though she was against it. However, Jon was not a match.
They were left with few options, including Lisa waiting for five years for a possible cadaver donation or being a part of a “paired kidney exchange.”
“It’s a virtual matching system,” Lisa said.
She explained that a pair of people, one healthy and one in need of a transplant, sign up to be a part of the system.
Husband and wife were tested so they could find a match for Jon’s kidney and someone to match Lisa’s antibodies. They were then put into a database called the National Paired Kidney Exchange that checks for matches, making chains of as few as two pairs to as many as 30, Jon said.
“They told us it could be a year before we had a match,” Lisa said. “We thought that was better than waiting for another donor.”
After four or five months in the system and countless calls for potential matches, Lisa and Jon got the call: the registry had found people for the exchange.
The two went in for two days of testing to double check the results and make sure the match was correct. They were a part of a six-person chain.
The couple went under the knife on July 29, 2015, at Pinnacle in Harrisburg. Jon had his kidney removed and sent to a man in Wisconsin.
The same day, Lisa received a kidney from a man named Drew in Cleveland, Ohio.
“I call my kidney Drew,” she said. “I’m planning to write to Drew yearly to tell him how I’m doing.”
Lisa is so petite that the outline of the kidney can be seen on her abdomen where doctors placed it.
“I got a big, meaty man kidney,” she laughed.
All around good: Jon said he not only got his wife back because of this chain matching but also helped another person in the process.
“I was just so focused on Lisa and our son and helping them,” he said. “I was focused on getting my wife back. I realized later I just helped another guy get his life back, too.”
Lisa and Jon realized just how much the people surrounding them care, too. Lisa said their neighbors, along with family members, helped take care of their 11-year-old son, Tanner, after the surgeries.
“They were really incredible support people, and faith in God really helped,” she said.
Jon was to work within a few days and was fully recovered from the surgery after eight weeks. Lisa is still recovering from the surgery. She said she knows her healing will be a life-long process of medicines and doctors.
The couple’s story has helped encourage their friends to join the organ donor registry as well, Jon said.
“One of my co-worker’s mothers was a donor,” he said. “When we found out how many people her body helped, it’s just crazy.”
The two encouraged everyone to sign up for the registry.
For more information on becoming an organ donor in Pennsylvania, visit donors1.org.