SUMMIT / NEW PROVIDENCE, NJ — Summit resident Sarah Meyers knows a thing or two about being healthy, but only because she knows more about being sick than she ever would have wanted.
“I was 13 years old when I received the liver transplant,” Meyers, now 26, said on Monday, Sept. 21. “I was born with a disease called biliary atresia. Biliary atresia is when the bile ducts don’t connect properly. I had something called a Kasai procedure when I was a baby. That lasted up until I was about 13 years old.”
According to the National Institute of Diabetes and Digestive and Kidney Diseases website, biliary atresia is a condition in infants in which the bile ducts outside and inside the liver are scarred and blocked. Bile can’t flow into the intestine, so bile builds up in the liver, damaging it. The damage leads to scarring, loss of liver tissue and function, and cirrhosis.
“In elementary and middle school, I would often be in the hospital for different reasons related to my liver,” Meyers said. “So they noticed that my health began to decline. About a few months, maybe a year before my transplant, I started being evaluated at different hospitals, some in New York City. Ultimately, we ended up going to Jackson Memorial Hospital in Miami. The reason for that was the organ availability was much higher there, and I could get an organ faster. Luckily, we had the means to get down there and live down there.
“So, I was listed in May of 2007,” she continued. “A month later, I was eating breakfast, and they called us from the hospital in Florida and informed us that they had a liver for me. I was very lucky. I was only on the list for about a month. As soon as they called, we flew down to Florida from our home in New Jersey and I received a transplant a couple of hours later.
“Before my transplant, I felt different from other kids,” said Meyers. “In middle school, I had to wear something called a spleen guard around my stomach in gym class, because my spleen was enlarged and it was at risk of it rupturing. Besides being fatigued, I just was in and out of the hospital enough to make me feel different.
“So it was amazing to see,” she continued. “My skin was very itchy and very jaundiced; it was yellow before my transplant. I was very tired. I hadn’t had my period, and different things weren’t progressing as they should have. As soon as I had my transplant, my parents noticed the yellow color in my eyes and in my skin disappear. My skin was clearer. I had a lot more energy, and I just felt so much better. It was instantaneous.
“Following the transplant, it was a big recovery,” Meyers said. “I stayed in Florida for three months but was only in the hospital for about a week or two post-transplant. At first, I was in the intensive care unit, and then I transferred over to the general transplant floor for pediatrics, and then I was finally released. I had to stay local for checkups. Post-transplant, I am 100 percent good to go. The only thing I have to do is take immune-suppression medication, so that my body does not reject my new liver. I go to Columbia Presbyterian in New York, where my transplant team is. I see them twice a year for checkups, and I have blood work drawn every three months. I’m a teacher now. I got married last year; I like to travel. Aside from taking certain precautions, everything is as it would be for someone who doesn’t have or has never had health issues.”
Meyers acknowledges that 12 years post-transplant is a huge milestone, something she is excited to celebrate.
“My transplant anniversary is on June 15, and, every year, my family and I talk about it, or my mom would get me a little cake to kind of celebrate,” Meyers said. “But to me, I think organ and tissue donation is important, celebrating every year and remembering your donor. My donor was a 9-year-old boy from Louisiana, and that’s all the information I have on him.
“I think it’s important to reflect on that and to reflect upon the fact that I’m here because of another family’s generosity, taking a tragedy and turning it into a gift for someone else and their family. Organ and tissue donation are critical. So many people have received the gift of life, but so many more still need it. It’s so important to educate the public on organ and tissue donation. Without the generosity of others, people don’t have a fighting chance.”
Designed to be a healing and uplifting experience for those whose lives have been touched by organ and tissue donation and transplantation, the NJ Sharing Network’s 5K Celebration of Life is an annual event. This year’s event, on Sunday, Sept. 13, took place at the organization’s headquarters in New Providence. The Meyers family, including Sarah Meyers’ mother, Lisa, who is a former NJ Sharing Network Foundation Board member, joined other families to help celebrate the NJ Sharing Network’s 10th anniversary this year. Most participants watched through a livestream.
“We are the organization in New Jersey responsible for recovering organs for transplant: heart transplants, kidney, lung, liver, etc.,” said NJ Sharing Network Foundation Executive Director Elisse Glennon on Monday, Sept. 21. “We basically work 24 hours a day, seven days a week inside hospitals to work with families when their loved one dies, to see if they’re able to be an organ donor and if they want to be an organ donor. We work with the national waiting list, to determine who would be the patient to receive the organ. We coordinate all of that.
“The event last week was bringing together the entire donation and transplant community for what we call a ‘Celebration of Life,’” she continued. “So, we have donor families, transplant recipients and living donors all coming together, sharing their stories and educating the public about the power of organ donation, so people can feel comfortable with it.”
Witnessing the growth of the foundation is an emotional experience for Glennon.
“I started in the organization 10 years ago,” Glennon said, “so I was here when we had our very first 5K Celebration of Life, which was a much smaller event. Over the years, to watch it grow exponentially by the number of people that come out to join us and the dollars that are raised, it’s really heartwarming and emotional to see how far we’ve come and how far we’ve grown in 10 years.”
This year, the event was a different experience for virtual audiences, due to the pandemic.
“Normally, we have about 12,000 people at the physical event, and, this year, we did a 90-minute live broadcast from our main stage at the Sharing Network, where we would ordinarily have a big crowd watching before we went off for our walk,” Glennon said. “But this year, what we did was, we invited a select group of team captains. There were 75 people there, all spaced out, socially distancing and wearing masks. We followed all safety protocols and they were the live audience to our broadcast.
“We had a live show on Sunday morning, where people logged on to their computers. They were able to interact with us and post messages. It was a 90-minute program. We had a variety of speakers and some video submissions from our team, sharing their stories about why they walk with us every year. It could be a mother sharing a story about her child who died and became an organ donor, or it could be like Lisa, who was sharing the story of her daughter who received a liver transplant. So the transplant recipients and the families of the deceased organ donors and living donors submitted video messages, and we played those throughout the broadcast as well.
“The broadcast itself was seen across the country and in countries around the world, so we had quite a large audience of viewers tuning in. For anyone who missed it, the link is available on our website, njsharingnetwork.org, and Facebook page.”
Photos Courtesy of Sarah Meyers and Gary Mignone