Taylor Clarke celebrates two birthdays: the day she was born and her “re-birth” day. Her 21st birthday was last Sunday, but April 20 is the anniversary of the biggest gift she ever received — a new heart.
“Every day is a gift,” Clarke said. “Literally, every time I wake up, it’s a gift.”
Clarke, who graduated from East Rockaway High School in 2014, suffered from cardiomyopathy and could have died without a heart transplant. Then as a sophomore at Marist College in Poughkeepsie, she was constantly fatigued in October 2015. She initially believed it was a muscle issue or a vitamin deficiency, but after she underwent tests, the results were inconclusive.
Then, that Dec. 2, Clarke’s mother, Laura, noticed that Taylor was having stroke-like symptoms — including paralysis, dementia and loss of speech — and called 911. Taylor was rushed to South Nassau Communities Hospital, in Oceanside, and later transferred to North Shore University Hospital, in Manhasset. There she was diagnosed with cardiomyopathy, a disease of the heart. She was told that her heart was failing and operating at only 5 percent of its capacity. Doctors placed her on an extracorporeal membrane oxygenation, or heart and lung bypass, machine and told her family that she needed a transplant.
Clarke was taken by helicopter to Westchester Medical Center, which has a large transplant center, where she waited for a new heart. She said that she and her parents were baffled by the illness, since there was no family history of heart issues. They still don’t know what happened to her heart, she said.
While waiting for a donor, she had to learn to walk again following her paralysis, but had many visitors to keep her spirits up. As she remained at the top of the regional list for a heart transplant, doctors installed a left ventricle assist device to help pump blood through her body.
During her 4½-month wait, she worked with physical therapists to help her recover from the paralysis and to build up strength for her surgery. She said she also worked to stay mentally strong. “I’m gonna get through this and go home, and then my life will be normal again,” she remembered thinking. “I did everything I could and then put it in the doctors’ hands, and that’s the reason I’m here today.”
Clarke, who was 19 at the time, said most of the events between October 2015 and January 2016 are a blur. But, she added, she and her family will never forget when they discovered that a heart was available in New York state on April 19, 2016. The following morning, she was in surgery.
The operation lasted 12 hours. She said she was scared, but was excited to go home and begin her life again. She noted that many of her loved ones waited outside the operating room.
“It’s the coolest thing that her heart is beating … that we’ve been on this incredible, life-changing journey,” her father, Jack, told the Herald days after her procedure. “The support from our family, our friends, the doctors, the nurses … it’s overwhelming.”
Taylor said that she has the option to reach out to the family of her anonymous donor through a third party via letter, and vice versa, but is not yet ready to do that. “I still kind of struggle with the idea that someone died for me to live,” she said. “Because I get to celebrate every day, but others are still mourning ... I’m still grateful every day, and I think about that person every day, so I need a little more time before I reach out. But obviously, if they reached out, I would be so grateful and write back instantly.”
Though she recovered, Clarke never returned to Marist. She said she still keeps in touch with friends she made there. Over the past year, she took classes at Molloy College in Rockville Centre. She said she plans to study journalism at Hofstra University this fall.
She majored in education at Marist and hoped to teach young students. But because of the transplant, her immune system is suppressed, and she can’t risk exposure to the germs of young children, so she switched majors. She also has some dietary restrictions, and cannot eat grapefruit, pomegranate or raw cheese.
Clarke said she is grateful to still be alive. On her 21st birthday, she gathered with friends and family, much like she did on April 20 to celebrate the one-year anniversary of her new heart.
“Watching Taylor blow out her candles and smile so brightly, again, I was reminded of how grateful I am,” Laura Clarke said. “Because of her donor, Taylor got to see another two birthdays with great health and a healthy heart.”
Taylor said she learned from her experience, and would always be grateful for the gift of a new heart. “I think it taught me to not take anything for granted,” she said. “I thought everything was perfect, and then my life completely turned upside down. I just feel like everything I get to do is so exciting — even just waking up in the morning. … Everything’s been perfect now, and I really couldn’t ask for anything more.”