Racing to keep up with an enthusiastic puppy, her wavy blond hair tied in a ponytail, Jessica Chipkin-Klein looks like any other healthy, young woman speed-walking along the riverfront in Hoboken, New Jersey. With two happy dogs walking in sync alongside her, she sometimes logs 13 miles a day.
But 15 years ago, Jessica couldn’t walk from one end of her college campus to the other.
She was a student at Penn State when she noticed the symptoms, feeling increasingly unwell during her sophomore and junior years. At first she blamed the fatigue, nausea, weight gain, depression and lack of concentration on her fast-paced college lifestyle. But the symptoms worsened the summer before her fifth and final year. She couldn’t focus long enough to flip through a magazine, and debilitating nausea hit her with little warning. One day on a bus ride into New York City, she vomited into her water bottle, only to be admonished by the driver. She threw up again inside the Port Authority bus station. Looking back, Jessica says it felt like a combination of mono and ADHD.
She’ll never forget what came next: her “crash day,” June 6, 2005. She was at her parents’ home in Kinnelon, New Jersey. While they were at work, every symptom came to a head. She began vomiting bile uncontrollably and collapsed on a couch in the basement, where her brother found her hours later. She was so jaundiced that today she describes herself as looking like a yellow highlighter at the time.
Jessica was rushed to a hospital in New Jersey and underwent multiple blood transfusions to fight severe anemia. Even after a week, doctors couldn’t pinpoint the exact cause of her symptoms. When she stabilized, she was transferred to another hospital, where the diagnosis was made. Jessica had Wilson’s disease. The rare genetic disorder affects one in 30,000 people and causes copper to accumulate in the liver, brain and other vital organs. Untreated, it can result in death.
By the time Jessica was transferred to NewYork-Presbyterian/Weill Cornell Medical Center, she was in acute liver failure, and her kidneys and other organs were beginning to fail. “My whole body was shutting down,” she says.
She was put on the national transplant waiting list with a MELD (Model for End-Stage Liver Disease) score of 40+ on a scale of 1 to 40, and given a Status 1. Simply put, death was imminent if she didn’t have a liver transplant immediately. Eleven days later, as she waited in the ICU, a match was found.