Dina participates in the discourse at the LI TRIO meeting.

Life was a struggle from the beginning for Dina Grgas. She was born with an extremely rare liver disease called Criggler-Najar Syndrome Type 1. The condition was so uncommon that she was the first diagnosed case in the United States.

At the time she was born in 1965, the idea of a liver transplant was far-fetched. “The doctors were hoping that some kind of treatment, such as gene therapy, would become available,” Dina says. “But even today that’s still way off, and they’re not even close to a cure for this disease.
In order to survive, Dina had to be kept under special fluorescent lights while she slept at night from the time she was born. Custom-made bulbs were placed over her bed, just a foot away from her body. The lights helped keep the level of potentially toxic bilirubin in her body down. For the treatments to be effective, she couldn’t wear pajamas or sleep under covers, so her parents placed an extra heater in the room to keep her warm in the winter, and an air conditioner to keep her cool in the summer.
“My mother never got a good n ight’s sleep all the time I had to sleep under the lights, because she worried that something might go wrong,” Dina recalls.

During Dina’s childhood her family often took month-long vacations to St. Thomas in the Virgin Islands. While that may sound like a dream vacation to most, Dina had to spend nearly every minute of daylight in the sun, as part of her treatment. “If I wasn’t under the lights I had to spend time in the sunlight. I used to feel like a plant,” she says.

As Dina grew in size the light treatments, indoor and outdoor, weren’t as effective. As a result, Dina was continuously in and out of hospitals, feeling sick much of the time. Her doctors began to discuss transplantation as an option by the time Dina was 10-years-old, but liver transplants at that time were still highly experimental.

Instead, Dina continued to struggle and was constantly having to be hospitalized.

“My life was anything but normal. For the most part I had been able to keep up with other children while I was growing up, but in college I could only study part time because of my health. The toxins were building up and that impaired me.”

In 1989, when she was 24, she traveled with her parents to London, England to explore a new liver transplant program. But when the family arrived in London, they were disappointed to learn that the doctors in the transplant center had changed their minds about attempting a transplant. “They discouraged me from pursuing a transplant by talking about the negative aspects of transplantation,” Dina recalls. “It was very disappointing and frustrating for all of us.”

A few months later Dina was back in the hospital with an infected gall bladder, which had to be surgically removed. The surgeon who performed the operation at New York University Hospital was a transplant surgeon. He encouraged Dina to go for a transplant, and notified Dr. Lewis Teperman, another transplant surgeon at NYU, of her case. “Dr. Teperman told me I should get on a transplant list as soon as possible. He asked me, considering the condition I was in, why I hadn’t been transplanted already. He said I was not only qualified to be listed, but was over qualified.” Teperman assisted Dina in getting on a list.
Meanwhile, her health continued to decline. She became incoherent and was placed on life support in an intensive care unit. “It was the worst nightmare of my life.” She rallied and was able to function minimally while the wait for a liver continued.

In January 1990 Teperman, now at the University of Pittsburgh Medical Center, decided to have Dina flown down to Pittsburgh, where she would be immediately transplanted as soon as a suitable liver became available. Twice within a week organs became available, but one was unsuitable for Dina and the other had been damaged. Within a few days a third liver, this one suitable, arrived, and Teperman performed the transplant that would save Dina’s life.
Although she endured 12 hours of surgery, Dina awoke from her deep sleep and almost immediately felt a remarkable change in her condition.
“I felt like a new person. The liver was functioning perfectly. They were amazed because they never saw a body accept a liver transplant so quickly.”

Within a few days she was walking around and in two weeks she was home. “It felt so good to be able to sleep in a dark room, under covers.” Dina went to work for her father’s business, then established her own fast food business until 1992, when she began taking graduate school classes in nutrition at C.W. Post with a goal of becoming a dietitian. She recently was approved for an internship program.

Ever since her transplant, Dina has kept in touch with the family of the 17-year-old boy whose liver she received. There was a regular exchange of letters, cards and phone calls. “I always talked about going to Virginia to meet them,” she says, and last September she got the chance.
“It was extremely emotional,” she says.

“I’d wanted so badly to meet them. There was nothing in the world I wanted more than to give my donor family a hug and sincere “thank you” for what they did for me.” Dina stayed in the family’s home and even slept in the room that had belonged to their son Chuck before he’d died in a auto accident.”

“They took me to the site of the accident, and we went to Chuck’s high school, where there’s a memorial plaque with his name on it. Then we went to the cemetery where he’s buried and I brought some flowers.” It meant a lot to Chuck’s family to finally meet the person whose life their son had saved. “They knew they made the right decision in agreeing to donate their son’s organs. They could see how healthy I was, how well I was doing and how appreciative I was.”

Dina also met Chuck’s best friend, who’d been sitting next to him in the pickup truck. “It was difficult for him. But he got some solace in knowing what his friend did and how appreciative I was. She didn’t get to meet the man who was driving the car, but learned that he was sober and driving responsibly at the time of the accident.

Dina learned that just weeks before the tragedy, Chuck had mentioned to his sister that he wished his organs to be donated if anything happened to him. After the accident, when doctors in the hospital determined there was no brain activity, Chuck’s sister remembered what he had said. This made the decision much easier on his parents when they were asked if they wished to donate.

Since receiving her second chance at life, Dina has spent much time trying to inspire others with liver diseases and spreading the word about organ donation and transplantation.

The memorable visit to Virginia was not the last for Dina. “I plan to see them again. I really felt like I was going home when I went there. It didn’t feel at all uncomfortable. I feel truly blessed to have a donor family like this as a part of my life, and strongly encourage any recipient to do this if they can.”

Dina says she feels even more of a connection to her donor than she did before. “He’s part of my identity,” she says. “I feel as if he’s watching over me. I feel his presence and I know I’m never, never alone.”