One Woman’s Journey From the Organ Waitlist to Aspiring Transplant Surgeon
Advocacy A genetic disorder threatened to take Trine Engebretsen’s life when she was a girl. Years later, as a mom and aspiring surgeon herself, she wants to help save others.
When Trine Engebretsen was 2, doctors diagnosed her with a genetic disorder that was causing life-threatening liver failure. So Engebretsen’s mother began a campaign to identify a donor and, thanks to her efforts and doctors’ successful procedure, Engebretsen is now a 36-year-old healthy woman, wife and mom of two.
What she’s also? An aspiring transplant surgeon — a feat she set her sights on due to her life experience.
“I feel it’s part of my duty to help pay forward that generosity that we have been given to other people,” Engebretsen says.
Fighting liver disease
Engebretsen was diagnosed with alpha-1 antitrypsin deficiency, a genetic condition that causes liver cells to die, eventually leading to liver and lung disease. According to the National Institutes of Health, the disorder occurs in one in about 1,500 to 3,500 people with European ancestry.
Her family, originally from South Florida, took her to 13 doctors across the country in search of a diagnosis. She eventually learned the truth behind her illness at Boston Children’s Hospital, where doctors told her she’d need a liver transplant or risk serious organ damage.
According to the United Network for Organ Sharing (UNOS), a record 30,000 transplants were performed in 2015. But in the late ’80s, when Engebretsen was seeking a donor match, the procedure was fairly new. Even when she did identify a match and underwent the procedure by legendary transplant surgeon Thomas E. Starzl at the University of Pittsburgh, doctors only gave her a 30 percent chance for survival.
“My whole family wouldn’t exist if there wasn’t an organ donor.”
Supporting others like herself
Engebretsen overcame doctors’ expectations, and went on to work and volunteer in Australia, and through several U.S. organizations like the Life Alliance Organ Recovery Agency in Miami, to help others.
While studying biology at the University of Miami for her undergraduate degree, Engebretsen intended to go into patient education, working for a hospital or some other public institution.
“I had always had an interest, but to be honest, I kind of knew a little too much,” she says. “I would see [transplant surgeons] sleeping on cots in between patient visits, and they never saw their families. I wasn’t sure I was willing to commit my life to how much they sacrificed.”
However, her mentors, plus watching her husband of nine years endure a liver transplant at age 26 due to a personal health struggle, encouraged her to change course.
Now, the Florida International University medical school graduate is in her fourth year of residency in Macon, Georgia, and between parenting her two sons and finishing her education, she collaborates with groups like Life Alliance and UNOS to raise awareness about the importance of transplants.
“My whole family wouldn’t exist if there wasn’t an organ donor,” Engebretsen says. “In my own way, I’ve adapted my personal sacrifice to make sure other people have that benefit.”