When Terri Lynne Willis visited her doctor Samir Parekh, MD, in the summer of 2021, her liver had recently turned 30 years old.
“I asked him, ‘Do you know anyone that was 40 years out?’” she recalls. He thought some, she says, and then answered that he didn’t.
“Well, hang around,” Terri told him, “You will.”
As one of the first pediatric liver transplant patients in Georgia, Terri was 13 when she received the liver that she still has today. July 2, 2021, she celebrated the 30th anniversary of her transplant – a milestone that is important for her to share with others.
“You don’t hear stories like mine, the people who are this far out,” she explains. “I hope it gives somebody some hope, even people who are waiting and haven’t had their transplants. You know, they’re wondering what their lifespan could be afterwards.”
You might hear of a person who’s lived for five or 10 years after a transplant, Terri explains, but her case is unusual. According to the Emory Transplant Center, about 70 to 85% of patients live for five years or more.
Waiting for a Donation
Terri was born with a condition called tyrosinemia, which means her body was unable to break down the amino acid tyrosine – something commonly consumed in food like chicken, turkey, fish, milk, and cheese. “I basically lived like a vegetarian,” she says. And then one day, she received a letter from her doctors at Egleston Children’s Hospital that said children with tyrosinemia were developing liver cancer, and she’d need to be checked.
“I had cancer, too,” Terri says, “And the next thing I know, we’re all told I needed a liver transplant. It seemed like things moved pretty fast after that.” Next, Terri was admitted for evaluation, and once testing was complete, she was on the transplant list. “Then I waited six months,” she says.
Currently, more than 116,000 people in the United States – including more than 2,000 children – are in need of an organ transplant. In 2021, nearly 12,000 people waited for a liver donation, according to the US Department of Health and Human Services Division of Transplantation, and only 9,236 transplants were performed that year. Their website also includes an even more sobering statistic: every day, 17 people die while waiting for a transplant.
“Back then, you had a pager,” Terri remembers. She and her mother were running errands for her grandfather’s birthday – which was the next day, on July 2. Their pager went off while at lunch with the news that a liver was available.
With her wry sense of humor, Terri remembers the night before her transplant. “The nurse brought me Valium and said it would calm my nerves and make me feel better,” she begins. “I said, ‘I feel fine – you need to give it to my mom; she’s the one who needs it more!’”
Life after a liver transplant comes with ups and downs. “Going through puberty and dealing with the side effects from medicine at the same time was a very strange experience,” Terri observed. One of the medications she was taking caused her to grow large fibroids in her breast at age 15 – she visited Winship Cancer Institute of Emory University, where Toncred Marya Styblo, MD, a surgical oncologist who specializes in breast cancer, removed them. She experienced rejection in 2015. More recently, in 2018, Terri developed a severe fungal infection called cryptococcus, which caused her to be hospitalized five times and required daily infusions and lung surgery.
Despite these challenges, Terri says she’s accomplished a lot, thanks to her transplant and her care team at Emory Healthcare.
She started running as an adult and remembers that at first, as she increased her physical activity, she couldn’t run a mile. “Well, I got to a mile, and I had never been able to do that in my life,” she says. “And it just shocked me, so I kept going.” Eventually, Terri ran a marathon. “It took me six hours to do it, but I finished. I wouldn’t have been able to [run] or do anything without my transplant,” she remarks. (At one point during Terri’s fungal infection, she recalls her doctor telling her that recovery would be like a marathon. Terri replied, “We’ll see about that; I’ve run a marathon before.”)
Although Terri’s recent health issues keep her from running, she continues to make time for regular walks – even when at Emory University Hospital being treated for her infection. She mentions an encounter with a nurse one day, while she was getting ready for her daily walk. The nurse remarked, “You don’t look like a patient – you look like you’re about to go running somewhere.” Always ready with a comeback, Terri replied, “Well, why don’t you tell the doctors that so I can get out of here.”
Connecting with a Care Team
Terri still visits Emory Healthcare regularly for the ongoing care she needs. She says, “Normal has been something my body doesn’t maintain for very long, so I’m a frequent visitor.” She has several labs taken each month and has visited Dr. Parekh every six months since 2008.
She frequently describes how her doctors at Emory Healthcare have been an important part of her life. She started seeing Dr. Parekh in 2008 and says, “He has seen some really high and some really low events.” He’s very understanding and very compassionate, she says, and takes the time to listen to her questions. “I just don’t know what I would’ve done without him all these years,” she says.
She also felt a strong connection with Rachel J. Friedman, MD, who treats infectious diseases and treated Terri during 2018. Terri says, “When I’d email her, I used to write ‘Die, fungus,’ and she said I needed to come up with a different narrative.” In her hospital room, Terri had a whiteboard on which she’d write a goal each day, prompted by Dr. Friedman. The next day, Terri says she wrote, “Take up pole dancing – already have the pole,” referring to her IV. Dr. Friedman’s encouragement of Terri’s sense of humor helped her make it through her hospital stay, she says.
“Dr. Parekh has always taken care of me and has been my primary provider,” Terri notes, “but when I got this fungus, I got to know the whole team. They all came together and treated me in the hospital.”
Even the surgeon who performed Terri’s transplant decades ago, Thomas Dodson, MD, who is now a vascular surgeon at Emory Healthcare, still visits her when she’s admitted, she says.
In March 2022, Terri had a biopsy performed on her liver. Some of her lab results showed elevated measurements – likely because of her anti-fungal medications. However, since Terri has a history of rejection, this was a potential risk, so the procedure could evaluate the cause. About a week later, at the start of April (which is Donate Life Month), Terri got the news that her biopsy results were good.
“No rejection,” she said. “My liver is just being a drama queen.”
A Chance to Grow Up
“If you’ve heard my story, and still don’t think organ donation is important, I don’t know what to tell you,” Terri says. She says she thinks about her donor, an 11-year-old girl from Arkansas, every day. “I don’t know her name, or anything about her,” she reflects, “But her parents, or mom, in the grief of losing their child thought about saving another child. That says a lot.”
Even with all of the issues she’s experienced, Terri says the transplant gave her a chance to get older. “I’ve seen my niece and nephew born. I’ve seen them have kids – I was in the delivery room with one of my great nieces when she was born,” she says.
She recalls a line from a Garth Brooks song and quotes, “I could’ve missed the pain, but I’d have had to miss the dance.”
While joking with her doctor at her recent visit, she remembers Dr. Parekh telling her he’d see her when she’s old and gray. Terri responded, “I’m going to hold you to that.”
You can register to become an organ donor by visiting Donate Life Georgia.
About Emory Transplant Center
Emory Transplant Center is a leader in clinical excellence and in pioneering new transplant therapies. We offer the newest technology and superior outcomes in heart transplant, kidney transplant, liver transplant, lung transplant, and pancreas transplant.
Our patients come from all over the nation for our high level of expertise and proven patient outcomes. We are proud to be ranked among the top 20 transplant programs in the nation and have performed more than 10,000 transplants to date — making us a leading national program.