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At 12 years old, Julie Bonn became sick with flu-like symptoms that wouldn’t let up. Her pediatrician referred her to the Pediatric Liver Care Center at Cincinnati Children’s where she was eventually diagnosed with fulminant hepatic failure, meaning her liver was failing. She underwent a liver transplant, two angioplasties and four bouts of organ rejection before making a full recovery. Now she is a college student with hopes to one day work in pediatric medical research. Julie Bonn just couldn’t kick the flu. At 12-1/2, Julie had never had any liver problems in her life, so she and her parents didn’t suspect anything serious. But after several trips to the pediatrician and with the symptoms still hanging around, she was referred to gastroenterologist, William Balistreri, MD, in the Pediatric Liver Care Center at Cincinnati Children’s. More tests there failed to uncover the cause. The Bonns headed home. About a week later, Julie started retaining water. This time, when her parents called Dr. Balistreri, he told them to come to the hospital immediately. It was then that Julie was diagnosed with fulminant hepatic failure. Dr. Balistreri told Julie’s parents that her liver had about seven days of life left in it. Fulminant hepatic failure is also called acute liver failure. (Acute means it came about suddenly and progressed quickly.) Acute liver failure occurs when many of the cells in the liver die or become very damaged in a short period of time. This causes the liver to fail to work normally and, as a result, patients may develop a change in level of alertness or even go into a coma. The condition develops fast, so it’s critical to get care quickly as Julie did. For most children, the outcome is fatal without a liver transplant.
Julie was fortunate. An organ donor was found for her before her liver gave out. She underwent a transplant and then started the long journey back to health. Over the next three years, she had two surgeries to repair blood vessels (angioplasty) and went through organ rejection four times. Each time liver rejection happened, “it was kind of depressing,” recalls Julie, because it meant starting anti-rejection medications – and experiencing their unpleasant side effects – all over again. “At one point I was taking eight meds a day. One of the hardest things to deal with was the side effects,” Julie says. She refers to common transplant medication side effects like weight gain, puffiness in her face – called “moon face” by other transplant survivors – and increased hair growth. “I was told by a lot of my visitors that I was very irritable at times,” she says with a laugh.
The teen years can be tough for anyone. Throw in excess weight, stretch marks and a face twice its usual size, and it’s easy to see why Julie struggled. She had been away from school for about four months when she was healthy enough to return. After seemingly endless time in the hospital and experiencing anything but a typical day, she was finally looking forward to something “normal.” But when she arrived at school that morning, some of her classmates didn’t even recognize her. She wrestled with one moment being incredibly grateful just to be alive, and the next feeling a deep depression about how the medications were changing her physical appearance. Julie coped during this time by relying on others for support and keeping busy reading, baking and cross-stitching. She eventually got back into Girl Scouts and sports. She kept a scrapbook of her experience. And she got through it. “I have a very different outlook on life now,” Julie says. “It matured me a lot.”
Most of the time the cause of acute liver failure in children cannot be determined, as was the case with Julie. One study showed an undetermined cause for about 44 percent of all children who were diagnosed with acute liver failure, and about 63 percent for children less than 2 years of age with acute liver failure. “It’s really frustrating not to know why it happened,” she says. But Julie learned over time to get past that frustration. With wisdom beyond her years, she continues: “You can’t dwell on the negative. I believe that everything happens for a reason. I just don’t necessarily know all the reasons.” The last time Julie went through liver rejection was in September 2003. Since then, her physical health has been good, and it’s always top of mind for her. “Health is my number one priority. I don’t think people my age think about their health as often or as much as I do.” Claiming to have a more positive outlook on life as a result of her transplant experience, she says matter-of-factly, “Life is a gift not to be taken for granted.”
Eight years later at age 20, Julie remains a patient of Cincinnati Children’s, visiting Dr. Balistreri for yearly checkups. He likes to suggest that one day Julie will take over his job. “Dr. B is great,” Julie says. “He always makes me feel special.” And Julie now has a new relationship with Cincinnati Children’s – as an employee. She works part-time as a research lab aid in the Division of Developmental Biology, while also working toward her undergraduate degree in biomedical engineering at the University of Cincinnati. Her transplant experience has helped shape her future. “I’ve always been interested in medicine, but after my transplant I was encouraged to go along this path of pediatric research,” she says. She’s interested in one day doing research on transplant medications and exploring the possibility of eliminating some of those medication side effects that she dealt with for so long.
Perhaps she will be taking over for Dr. B someday.
Julie works part-time in a lab at Cincinnati Children’s (above) and also studies biomedical engineering at the University of Cincinnati.
If you have an experience with Cincinnati Children's, we invite you to share your story.
Julie Bonn says her experience with liver transplant has given her a more positive outlook on life.
The Pediatric Liver Care Center at Cincinnati Children's Hospital Medical Center strives to optimize the quality of life of children suffering from liver diseases.
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