Former mayor of Quincy, Illinois, advocates for organ donation after lifesaving transplantation
Charles “Chuck” Scholz, 62, of Quincy, Illinois, has always been an active member of his community and served as the town’s mayor for three terms, from 1993 to 2005. After receiving a liver transplant at Barnes-Jewish Hospital in early 2015, his community involvement has focused on a specific cause: spreading the word about the lifesaving power of organ donation.
Scholz’s liver problems began in 2006, when he was considering a candidacy for the Illinois House of Representatives. He felt uncharacteristically run down, which he initially attributed to campaign stress. “I’m usually full of energy. I run a law firm with one of my sons and golf regularly,” says Scholz. “But I felt weak and couldn’t do those things. I just wasn’t myself.”
His primary care physician in Quincy referred him to Jeffrey Crippin, MD, medical director of liver transplantation at Barnes-Jewish Hospital, who diagnosed Scholz with nonalcoholic steatohepatitis, or NASH. This disease affects 2 to 5 percent of Americans and is characterized by fat in the liver and inflammation. It’s often called the “silent” liver disease because its symptoms can be minimal to nonexistent.
“Dr. Crippin told me that I could get on the transplant list, or follow a medical treatment plan to see if my health would improve,” says Scholz. “And for nine years, I followed his guidelines, and they worked. I lost nearly 40 pounds, ate healthier and got away from the stress of public life.”
But in September 2014, Scholz took a turn for the worse. He had crippling stomach pain and couldn’t walk a flight of stairs without feeling winded. Scholz’s liver disease had caused scarring, or cirrhosis, in his liver. The cirrhosis led to fluid build-up in his lungs, which was the source of his fatigue. A magnetic resonance imaging (MRI) test revealed another, even more troubling problem: a tumor on his liver.
“Cirrhosis increases the risk of cancer,” says Dr. Crippin. “With Mr. Scholz, we encountered a common situation in which we were treating him for the problem with his lungs, but then found a cancerous spot on his liver. A transplant was really his only option at that point.”
As a first step in the transplantation process, Scholz started working with Pam Thurston, RN, MSN a Barnes-Jewish Hospital transplant nurse coordinator who managed the rigorous evaluations Scholz needed before he was qualified as a transplant recipient. Once approved, Scholz was included in the transplant waiting list, which is managed by the United Network for Organ Sharing (UNOS).
Once on the list, a liver cancer patient may wait a year or more for a new organ. The American Liver Foundation estimates that at any given time, there are more than 17,000 adults and children actively waiting for new livers. Due to a shortage of organs, nearly 1,500 patients on the registry die each year while waiting for a donated liver to become available.
“There are so many factors involved in finding the right organ match. That’s why it’s so incredibly important to register to be an organ donor,” says William Chapman, MD, FACS, a Washington University surgeon and transplantation specialist at Barnes-Jewish Hospital. “In Mr. Scholz’s case, which was similar to 80 percent of liver cancer patients’ cases, underlying liver disease caused cancer, making transplantation the only option. It’s never easy to talk about, but the more donors we have, the more lives we can save. It’s just that simple.”
Over the next several months, Scholz was admitted twice for transplantation surgery but, in both cases, the donated liver ultimately wasn’t viable.
“It was easy to feel discouraged,” says Scholz. “But Pam Thurston, our nurse transplant coordinator, was there to answer our questions and support us anytime we needed her. Dr. Crippin helped me stay as healthy as possible while I waited. It was always clear they were 100 percent committed to success. It made the whole ordeal a lot easier on us.”
For Scholz, the third time was the charm. In February 2015, Scholz was at work when he got the call he’d been waiting for. Scholz, his two sons and his wife rushed to St. Louis. A few hours later, Dr. Chapman successfully performed the transplant surgery.
“Two weeks later, I was already enjoying life again. I had almost forgotten what it was like to feel good,” says Scholz. “I don’t have words to express my gratitude to Pam, Dr. Crippin, Dr. Chapman and the whole transplant team. They treated us like family.”
Scholz is now an outspoken advocate for organ donation, promoting it through several media outlets in Quincy. And he’s collaborating with Illinois Secretary of State Jesse White, whose office maintains the state registry for organ and tissue donation, to develop an awareness campaign.
“I want to do my part,” says Scholz. “My donor didn’t just save my life, he or she saved numerous other lives, too. I think a lot of people don’t understand that the simple act of registering to donate could make all the difference for somebody’s family.”
This year, the Washington University and Barnes-Jewish Hospital Liver Transplant Program celebrates 30 years and thousands of lifesaving transplant surgeries. To learn more about the Barnes-Jewish Hospital transplant team, or to read more patient stories, visit barnesjewish.org/liver-transplant. For more information, call 888-998-7182.
To learn more about organ and tissue donation, or to register to be a donor in your state, visit organdonor.gov.