For NJ ice skater, rare heart disease inspires new mission
It was two days before Christmas 2019, when she felt it.
Kiersten Rock-Torcivia was used to nerves before her synchronized skating competitions. But that day on the ice at Mennen Arena in Morristown, the feeling was different, frightening.
Her heart was racing. Black dots clouded his vision. The Rockaway Township teenager slipped off the ice and was rushed to the emergency room.
âWhen we got there my heart rate was over 283,â recalls Rock-Torcivia, now 16. They were shocked that I was still conscious. It was chaotic all around me. didn’t know what to do.
It would take months of testing, but high school junior Morris Knolls was eventually diagnosed with ARVD / C, a rare heart condition that can cause the electrical system that keeps the heart to work suddenly and fatally. Doctors sometimes call it a “silent handicap”, given its propensity to cut short the careers of young, outwardly healthy athletes.
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ARVD / C affects less than 1 in 1,000 Americans but is responsible for a fifth of all sudden cardiac deaths in people under 35. For Rock-Torcivia, its effects were drastic: after years of competing on the ice, he was told to avoid anything that was more tiring than yoga. She was forced to walk around the school with a portable defibrillator, hoping her friends wouldn’t have to use it.
Yet struggles also inspired her to give back. Rock-Torcivia founded a charity to provide Automated External Defibrillators (AEDs) to local communities. On Sunday, she will hold an auction in Rockaway Township to purchase another of the $ 1,200 devices for a nonprofit Paterson. Other donations went to pediatric hospitals.
A medical mystery
When she arrived at Morristown Medical Center on December 23, 2019, Rock-Torcivia said, doctors were puzzled.
Once her heart rate stabilized, she was hooked up to monitors and put through a battery of tests – ECGs, stress tests, MRIs, and CT scans. But the doctors still couldn’t explain what was going on. They told her to keep her adrenaline level low and advised her to hire an AED and take it with her wherever she went.
âI had to take one with me, whether I was home or going out to see friends,â said Rock-Torcivia. “I was really scared that something was going on, [that] I would be oblivious and my friends wouldn’t know how to use it.
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Doctors at New York Presbyterian Hospital later diagnosed him with ventricular tachycardia, an abnormal heart rhythm, and surgery scheduled for the first week of March 2020. The family was excited. The procedure has a high success rate, said Kiersten’s mother, Deirdre Rock, and her daughter wanted her life back.
Instead, they hit another bump in the road. Surgeons expected to find “an additional electrical path” in the girl’s heart that they could surgically close. Instead, they found one problem after another that triggered more arrhythmias.
What was supposed to be an hour-long operation lasted four hours. On the way home from the hospital, her parents explained that things did not go as planned. Every time doctors closed a failed lane, another was discovered.
âThey got to the point where they realized there was so much popping up that it wasn’t going to help,â Rock-Torcivia said. “That’s when they realized it was something even more serious.”
The Morris teenager skated with a private club, Team Image, based in Westchester County, New York. The team was preparing to attend the national championships.
After the operation, reality prevailed: she would not return to the fray.
âI really wanted to skate at the national championships, which is the big competition,â she said. “We would drive to New York for practice and I would sit on the side, on the bench and watch all my friends skate.”
Doctors from the New York-Presbyterian referred the family to Boston Children’s Hospital for genetic testing. They ultimately made a diagnosis: Arrhythmogenic Right Ventricular Dysplasia / Cardiomyopathy, or ARVD / C.
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ARVD / C is an inherited disease in which parts of the heart muscle are replaced by fatty tissue, disrupting electrical signals, according to Brigham and Women’s Hospital in Boston, which says the disorder affects 1 in 1,000 people. to one in 5,000. 2013 study Researchers at Johns Hopkins University have found that frequent and vigorous exercise dramatically increases the risk of developing symptoms.
The family had an answer as the coronavirus pandemic shut down the world around them. Rock-Torcivia said she felt isolated as the pandemic raged, cut off from her teammates and unable to do the exercises and physical activity that have filled her days for so many years. The blood pressure medication also slowed her down, leaving her tired.
Still, she went to cheer on her teammates when she could. Before competitions, she would do a warm-up lap with them and return to the bench.
âI got out of the mirror and looked at them. It was heartbreaking. But I wanted to support them, so I drove all the way here to sit and watch, âshe said. âIt was a dream of mine to be on this ice. I worked hard for it.
The state of Rock-Torcivia has changed its plans for college and beyond. She had considered schools in Boston or upstate New York, near major ice sports centers.
Now she knows she will have to study near a large hospital with a medical team familiar with ARVD / C.
The ARVD / C also shapes its career plans. Rock-Torcivia thinks more in the medical field, perhaps by becoming a doctor or a nurse. She said the revelation came to her as she jumped from hospital and doctor’s office to hospital: She wants to help people.
She created a charity, Sincere harmonies, to help children with serious illnesses. He provides pediatric hospitals with small bags containing headphones and a code to access the relaxing Spotify playlist that has helped her get through her doctor’s visits.
âWhen I was in the hospital there were a lot of beeps and people walking around and talking,â she said. “It was very stressful to hear all of this, so I would put my headphones on and listen to music to block it out. Everyone out there.”
She raises funds for the kits through donations and the sale of photos taken by her grandfather Bob Rock, an award-winning photographer, in his native Ireland. Her last fundraiser generated enough to donate an AED to the Boys & Girls Club of Newark.
She will have more photos available for sale between 1 p.m. and 6 p.m. Sunday at the White Meadow Lake clubhouse in Rockaway Township. She hopes to raise enough this time around to donate an AED to the nonprofit Oasis Haven For Women and Children in Paterson.
In September 2020, doctors implanted an internal cardioverting defibrillator in Rock-Torcivia, a device designed to get his heart going if it breaks again. It will need to be replaced every eight years, Deirdre Rock said.
It’s now part of her life, her daughter said, and she’s determined to work with it.
âBeing an invisible condition, a lot of people don’t understand that it’s something that I deal with every day,â she said.
Gene Myers is a reporter for NorthJersey.com. For unlimited access to the most important news from your local community, please subscribe or activate your digital account today.
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