For immunosuppressed organ transplant patients, living carefully and avoiding viruses is a way of life, but the spread of COVID-19 throughout our communities has introduced daunting new challenges.
The Washington University and Barnes-Jewish Transplant Center has seen a 30 percent decrease in organ donations, and many transplant programs around the country have paused operations in the midst of the pandemic.
COVID-19 is causing Jason Bruenderman, a two-time liver transplant recipient, and his wife, Christina, to be extra vigilant. “It’s kind of second nature to take basic precautions to reduce the risk from germs,” Christina says. “We have talked a lot about how scary it must be to go through a transplant right now. When Jason had his last transplant, we had so many people in the waiting room to support us. I can’t imagine not having that support or not even being able to be there.”
Even with the new precautions and frightening prospect of contracting COVID-19, Jason, Christina and their daughter, Ellie, are grateful for the second liver transplant that gave life back to Jason.
Jason’s transplant story began in 2000, when he was a college student living in Cape Girardeau, Missouri. He decided to give blood at a local Red Cross blood drive and thought nothing of it. Several weeks later, he received news that changed the trajectory of his life. His donated blood showed abnormal liver counts, and the Red Cross advised him to seek medical care.
“From there, it was just a roller coaster,” Jason says.
Though he wasn’t yet experiencing any symptoms, Jason consulted physicians at a St. Louis-based hospital. After biopsies and scans, the doctors had few answers and Jason eventually sought specialized care at the Mayo Clinic in Rochester, Minnesota. “It’s not something you can really wrap your head around,” he says. “You go from being a college student with no worries to travelling for medical tests. It’s the unknown of it all. You can’t prepare for how to make it better when they don’t know what’s wrong.”
He started experiencing severe itching and abdominal pain. Finally, in 2007, he received a diagnosis: primary sclerosing cholangitis (PSC), a rare disease that causes scarring of the bile ducts that leads to liver damage and, for some patients, liver failure. Though the disease usually progresses slowly, the only known cure is a liver transplant. In a small number of patients, PSC can return with the transplanted organ.
In 2011, Jason’s physician at the Mayo Clinic told him treatment options had run out and it was time to consider a liver transplant. He was referred to the transplant team at Barnes-Jewish Hospital and Washington University School of Medicine where he joined the transplant list.
The wait for a matching donor organ was hard on the entire family, especially their young daughter, Ellie, who was only three years old at the time.
“It was like grief at first, really and truly,” Christina says of Jason’s three-year transplant process. “You live by the blood draws,” she explains, which played a crucial role in determining his place on the list. They waited for Jason to reach the delicate balance of being sick enough to move to the top of the transplant list, while remaining healthy enough to endure the surgery.
“You’re so miserable and sick but the alternative is a very risky surgery. You don’t know what to wish or hope for because it’s all terrifying,” Jason says.
In 2014, Jason finally received the call that a liver was available. The surgery with William Chapman, MD, chief of the section of transplant surgery at Washington University School of Medicine, went smoothly, and the Bruendermans adjusted to post-transplant life.
Just a year and a half later, during a routine blood test, Jason’s physicians noticed some elevated numbers that were a cause for concern. Within six months, he was back on the transplant waiting list for a second transplant; PSC had returned.
“I was probably sicker than I’ve ever been going into this the second time around,” Jason says. “From July 2018 up until surgery, I lost a huge amount of weight, I was so sick all of the time. I couldn’t do anything.”
Luckily he didn’t have to wait long for the second transplant. The surgery was performed in February 2019 by Jason Wellen, MD, Washington University transplant surgeon at Barnes-Jewish Hospital. Despite some complications, the transplant was a success and Jason began his recovery.
Throughout all of the doctor appointments, medical tests and hospital stays, Jason’s young daughter became his biggest champion. “The second time, it was really hard to have to explain it to Ellie,” Jason says. “During the first transplant, she remembered us leaving her so much for appointments that we had to build her trust again with the situation.”
“We basically promised we would take her to any appointment and any hospital stay as long as it was okay for her to be there,” Christina says. “I don’t know how many times she slept in the ER. She was there the entire time.”
“She was like having a little nurse in the house,” Jason says. “She took my temperature, she got me blankets. When I got my staples out, she was right there. None of that stuff bothered her.”
As a part of her own healing process, Ellie is drawing pictures and writing a story for other children whose parents are going through a transplant procedure.
“It’s almost unchartered territory,” Jason says. “How do you communicate this horribly scary thing without terrifying them and without minimizing it? It’s tricky. Ellie didn’t want anyone else to have to go through that.”
Christina’s employer, Therapy Management Corporation, has an ongoing employee giving campaign called Together Making Changes, which benefits different charities each year. When the company made a gift in support of the Bruendermans to The Foundation for Barnes-Jewish Hospital’s Liver Fund, Ellie was right there to present the check to Dr. Chapman, the Foundation’s Eugene M. Bricker Endowed Chair in Surgery.
The gift supports research and patient care needs in the area of liver transplant. The Bruendermans hope the money will further research aimed at making more livers available for transplants so patients don’t have to wait as long for a match.
Today, though there are many uncertainties surrounding COVID-19, Jason’s second transplant has given the family a new lease on life.
“Now I’m able to get out and enjoy life,” Jason says. “I live an active lifestyle again. We were at the lake all of last summer, we went boating and swimming and hiking, all kinds of activities I didn’t have the strength for before. I have my life back.”
“Knowing he’s beat the odds twice,” Christina says, “it just makes you appreciate everything so much more.”