For more than two months, Shoreham native Rebecca Szymanski has been confined to the fifth floor at NewYork-Presbyterian Hospital in Washington Heights.
Just waiting.
Ms. Szymanski, 40, is patiently awaiting a match for a heart and liver transplant.
“It could be any day — I could get a call in five minutes, or it could be a week, a month or a couple of months,” she said in an interview Tuesday morning. “There really is no crystal ball.”
The waiting is something that Ms. Szymanski, who teaches special education at Mattituck High School, is accustomed to. She’s been on leave from teaching since mid-September after an appointment with her cardiologist revealed dangerously low potassium and kidney levels.
The results are related to a rare congenital heart condition Ms. Szymanski has had since birth: Pulmonary Atresia, Tricuspid Atresia and Transposition of the Great Vessels, meaning she was born with a three-chambered heart with no right ventricle.
She underwent her first open heart surgery at 30 hours old as doctors structured her heart to work without a right ventricle.
Since then, she’s had multiple heart surgeries and hundreds of other procedures to correct the condition. The benefits of the operations lasted until 2016, when she experienced two embolisms in her aorta that resulted in another open heart surgery to revise her previous heart operation from early childhood to a modern version in what’s known as an extracardiac Fontan procedure.
Under the care of Dr. Marlon Rosenbaum, Ms. Szymanski was told that it was possible and even likely that as a Fontan patient, her heart would shunt blood in a way that damages her liver, ultimately leading to cirrhosis.
“It was a conversation we’ve had before, so it wasn’t a surprise that a transplant was mentioned,” she explained.
In September, the evaluation process began to accept Ms. Szymanski as a transplant candidate.
“Dr. Rosenbaum stood up and advocated for me and really fought to give me this opportunity at a second chance,” she said, adding that she got the good news and was listed on the transplant list on Oct. 15.
In phone calls, FaceTimes and text messages to family and friends, Ms. Szymanski repeated the three words her doctor shared: “It’s a yes.”
Now, as she waits for the lifesaving transplant, Ms. Szymanski is sharing her story as a way to spread awareness about organ donation.
According to LiveOnNY, a federally designated organ procurement organization for the New York metro region, there are nearly 9,000 people statewide waiting for a lifesaving transplant. Nationally, that number is approximately 100,000. In New York, anyone over the age of 16 can register as an organ, eye and tissue donor.
“It’s as simple as putting a little heart on your license,” Ms. Szymanski said. “[Most people] don’t think about being an organ donor … but it’s so imperative. Although it’s unfortunate that people have to pass away, it’s amazing what the medical world can do. It allows people to have a second chance. And that person gets to live not just for themselves, but for the donor.”
Though living-donor transplants can typically be performed for livers, Ms. Szymanski’s case requires both organs to come from the same person. She said the donation may come from as far as 3,000 miles away in the United States and Puerto Rico. And though her name has popped up several times as a potential match, there are a slew of other factors that need to align for the operation to be a success.
In the meantime, Ms. Szymanski is keeping busy resting, reading, doing puzzles, binge-watching her favorite Netflix shows. She’s also following her doctor’s orders and trying to eat and gain weight to remain strong and stay active by walking, which will aid in her recovery process. Though she can’t leave her hospital floor, she’s been tracking 2.5 to 3 miles each day.
Ms. Szymanski’s support network, including family, friends and community members, have also pulled together to raise money to support her throughout the process.
An online fundraiser was organized by Melanie Unterstein, a longtime friend of Ms. Szymanski’s since their middle school days growing up in Shoreham-Wading River.
After launching the GoFundMe page on Sunday, Nov. 20, donors raised more than $47,415 toward of the initial goal set at $50,000.
The funds will help Ms. Szymanski with medical expenses that aren’t covered by insurance, including post-transplant medications, hospital transportation due to the frequency of visits after surgery, rehabilitation and cardiac therapy.
Monies raised will also help her family members remain close by as she recovers under the care of her medical team at NewYork-Presbyterian.
“She never asks for anything,” Ms. Unterstein said, adding that she was overwhelmed by the response the fundraiser has had. “She’s the strongest person I know. She’s been sitting in a hospital room for two months now, just waiting — and thinking of everyone else, too. I call her and she cheers me up.”
Ms. Szymanski said she’s incredibly thankful for the support she’s received. “It just means a lot to me. I’m seeing names pop up that I knew from elementary school or high school and even people in my community I didn’t know well,” she said. “When life gets hard and you’re facing extremely difficult challenges, the good side of people always comes out.”
More information
To make a donation toward Ms. Szymanski’s recovery journey, visit the GoFundMe page here.
Residents of New York ages 16 and older can register to be organ donors by joining the New York State Donate Life Registry. Click here to find out more. You can also learn more at liveonny.org.