Amazing Things: Jessica Chipkin-Klein
A rare genetic disorder threatens to derail one dog lover’s life.
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.
New Liver, New Life
“My whole body responded amazingly well to my new liver,” says Jessica. “I could feel the cognitive difference almost immediately. For the first time in months, the cloudiness that saturated my mind and body began to clear up. The toxic copper was finally getting discharged from my body because of my new liver.”
Jessica recovered well enough over the summer to return to Penn State in the fall of 2005, and she graduated the following May. After a stint in advertising, she earned her master’s degree in clinical social work at Hunter College, graduating in June 2010 and then interning in the gastroenterology and OB-GYN inpatient departments at NewYork-Presbyterian Weill Cornell Medical Center, where she had been admitted five years earlier.
“It was partly eerie,” Jessica says, “and partly inspiring to be walking the same floors!”
Just when life finally felt settled, a full-time job offer fell through and she felt burnt out and in need of a break. Her then-fiancé, Josh, asked her, “If you could do anything in the world, what would that be?” He told her to take money and degrees out of the equation before she responded.
The answer was easy: “I just want to be outside with dogs,” she said. “Dogs have always been a huge part of my life. I’ve always had a dog by my side, and when Josh and I moved in together, there was a void.”
Josh replied, “Go for it.”
They were married in 2012. “Most of the members of my transplant team were at my wedding,” she says.
After working briefly as a dog walker, in January 2014, Jessica founded Hoboken-based Gold Coast Pet Care (GCPC). Her business quickly grew from 12 to 90 clients, and she now has seven team members–including Josh who left his corporate career to become a co-owner–focusing on dog walking, dog sitting, cat care, and pet-related behavioral issues, such as separation anxiety and aggression. “We call them ‘visits,’” she says, “and they’re tailored to the pet’s needs, their routine and what the owner is working on.”
“It’s been an overwhelmingly amazing adventure, and the business brings all of my experiences, from my social work to advertising and my transplant, together in one beautiful way,” she says.
In addition to launching her own business, Jessica has also been active in raising funds and awareness for the American Liver Foundation (ALF). In 2009, she ran the New York City Marathon with doctors from NewYork-Presbyterian, who all ran on behalf of the foundation. Jessica bumped into one of her transplant surgeons, Dr. Benjamin Samstein, just before the 15-mile mark, on the approach to the Queensboro Bridge.
“We ran the bridge together,” she says. “We exchanged a few words and asked each other how we were doing. Neither of us could feel our legs at that point, but it was helpful to laugh it off together. We didn’t talk about patient-doctor stuff. We were teammates running a 26.2-mile marathon together on probably the toughest part of the course. I didn’t think about it then, but in hindsight it’s pretty mind-blowing knowing we shared that moment.”
15 Years Post-Transplant
While the world woke up to a new way of life during the coronavirus outbreak, Jessica found herself going about her daily routines without much change.
“In my post-transplant life, I have been living very carefully,” says Jessica, who has a routine check-up for her liver and blood work done every six months. “I have my own routine for how to navigate a public bathroom and avoiding doorknobs. I have been living my life not touching certain things like elevator buttons. Assessing the risk factors in public places is something I’ve been doing without realizing it. So in this new COVID life, these habits have definitely been an advantage for me.”
There were still some unexpected effects of the coronavirus outbreak. When New Jersey issued a statewide stay-at-home order on March 21, Gold Coast Pet Care was considered an essential business, “but as a team we decided we needed to play our part in flattening the curve,” says Jessica, who closed the business temporarily and applied for a loan through the CARES Act as well as held a fundraiser for her team. “I felt like I was going through a grieving process for the first few weeks, and a lot of those emotions were hitting me hard.”
Jessica says running has helped her not only through that tough time. Her hobby also helped her navigate the conflicted feelings of celebrating the 15-year anniversary of her transplant on June 24 at a time of national unrest sparked by anti-racism protests.
“My 15th anniversary came around and because of everything happening in our country, it affected me a lot differently this year than it has in past,” says Jessica. “I am grateful, but it’s been really hard to understand how to feel combined with everything going on in the world. There are so many social injustices, and I’ve been very much a part of the movement, speaking up and owning up to my privilege. I’ve learned a lot about myself, and I will continue to learn.”
One of the biggest lessons she embraces now? “This anniversary felt like a celebration of life, in every sense of the word,” says Jessica. “And I want to remain focused on that, not just on one day, but every day.”