For Angelica Berrios, a simple sneeze or even just getting up from laying down was sometimes difficult.
Any exertion had the potential for causing constricting chest pain.
But she learned to live with it. She limited her physical activity and learned to accept that she wasn’t the athletic type.
“I hated gym, hated running, hated sports in general,” Berrios said. “I thought that sports was not my thing.”
When it came to physical activity, she could never keep up. At one time, her pain was misdiagnosed as asthma.
While also a serious and potentially fatal illness, it wasn’t asthma that plagued Berrios.
It was something far more rare — and dangerous.
Berrios had what is called an anomalous coronary artery, a congenital defect where the arteries that feed blood to her heart are crossed, essentially acting as one artery instead of the normal two.
Coronary arteries deliver blood to the heart muscle itself, nourishing this most vital organ. Like any other muscle, to work properly, the heart needs a constant supply of oxygenated blood.
The proverbial ticking time bomb.
If left untreated, the defect might have killed her.
a fortuitous discovery
Instead of sports, Berrios spent her time in the library, babysitying her younger cousins, and involved herself in community service groups like the Key Club.
“I love to read,” she said.
After graduating from Patchogue-Medford high School in 2011, Berrios went on to earn a bachelor’s degree from Stony Brook University in health science. She eventually landed a job as a safety officer at Southside Hospital in Bay Shore.
“A safety officer is like a jack of all trades,” she explained.
Her job is to make sure the hospital is in compliance with regulatory agencies when it comes to undertaking construction jobs within the hospital. Safety officers also work to ensure that the primary work of the hospital is not interrupted.
“We make sure construction activities aren’t affecting patient care or staff,” she said. “If we have to shut down an area, there are a lot of logistics that need to happen.”
The job suited her personality.
“For me it’s fun,” she said. “I like puzzles. I like problem solving and the job is about problem solving.”
Southside Hospital is part of the Northwell Health system, and the company’s myWellness platform encourages better health for its employees through a variety of programs and rewards.
Berrios decided to take advantage of a portion of myWellness, through which participants earned money back toward their health insurance. A physical required an electrocardiogram (EKG).
Her test came back abnormal.
“I didn’t think anything of it,” she said.
But Dr. David Sedaghat, her Cardiologist at Southside Hospital, soon diagnosed her with an anomalous right coronary artery.
Berrios finally had an answer.
The rare birth defect had been the cause of her lifelong pain and discomfort. It was something that was usually found in young children, even infants.
Berrios was 24 years old at the time.
A variation of the defect she suffered from causes sudden death in athletes, the type you hear about when a player dies on a basketball court during a game or practice.
“Basically the heart has two arteries feeding the heart muscle,” said Southside Hospital cardiothoracic surgeon Dr. Robert Kalimi. “Her right coronary artery came out on the left side as one trunk to supply blood to the right side of the heart.”
In order to fix the problem, Dr. Kalimi was going to have to perform open heart surgery.
On May 15, 2018, just a week and a half before her 25th birthday, Berrios underwent the procedure. The surgery was supposed to take two and a half hours.
Berrios knew what to expect when she came out of anesthesia.
“I knew going in I was going to have a tube in my throat when I woke up,” she said. “I was mentally ready for that.”
She also expected that when she woke up in her recovery room her family would be by her side. But as Dr. Kalimi was finishing the operation, he realized there still wasn’t adequate blood flow to her heart.
“We recognized it wasn’t enough,” he said. “Right there and then we did the bypass procedure.”
While not planned, Dr. Kalimi said a bypass is something that could need to happen during this particular operation.
“That can happen often when you do anomalous repair,” he said. “You try to just patch it and enlarge the opening. Often you have to enhance it with a bypass procedure.”
Berrios said that, in all, she was out for 12 hours and when she woke up she was alone, in a dark room and understandably frightened.
This was not how she planned to come out of surgery.
“I had a melt down,” Berrios said. “It was dark. I had no idea what was going on.”
A nurse on the night shift came to her immediately and calmed Berrios.
She held her hand and talked her through the next couple of hours. With the tube in her throat, Berrios couldn’t speak. She asked questions by pointing and gesturing.
What time is it? (Pointing at her wrist.)
Can you take out my tube? (Pointing to her throat.)
“[The nurse] was amazing,” Berrios said.
Told that she would be out for several hours, Berrios’ family left the hospital to go home and rest. When they heard she had awoken, they came back and didn’t leave her side for the rest of her recovery.
“I was in the hospital for a week,” Berrios said.
She finally made it home but had to return to the ICU when she developed an ulcer in her throat she says was due to the stress and medication.
But she had a goal in mind.
She wanted to be home for her 25th birthday.
“I begged every doctor, every person to send me home,” Berrios said. “They did it. I was able to be home for my birthday.”
After five days in the ICU, Berrios celebrated her birthday that Saturday at home, surrounded by friends and family.
a support system
The surgeons at Southside Hospital perform just under 600 open heart surgeries every year, but Dr. Kalimi says Berrios’ condition is rare.
“We only see one every one or two years,” he said.
He praised Dr. Sedaghat for diagnosing Berrios with anomalous coronary artery.
“As surgeons we fix it, but diagnosing it is the trick here,” he said. “The key is a good cardiologist who did the proper testing to diagnose.”
Berrios says her surgery is really only part of the story. Her friends and family were critical to helping her get through the ordeal.
“Family almost has the worst part,” she said. “You have to watch your loved one suffer through this. I was asleep. They agonized.”
She was surrounded by family. Her mother and father, her two sisters, both of whom have moved off of Long Island, and enough family that people had to leave to let others come into the room to visit.
“I have a huge Puerto Rican family,” Berrios joked.
Her coworkers people who she worked alongside who became her caretakers-were also a big part of her recovery.
“These were my friends seeing me on the table,” she said.
Friends like Kristine Rojas, a nurse and senior administrator at the hospital, who had to break the news to her family that she was going to be in surgery much longer that planned. Who she worked with to help build the very ICU where Berrios recovered.
“It was very difficult for them on both sides,” she said. “They were trying help me medically and they were a mess worrying about me.”
She also found support in a community she connected with online with other patients who had open heart surgery, especially young people, a life-line during a very scary time.
She found it comforting to share with people what to expect from the operation.
“I realized I am not the only one,” she said. “Unless you have actually had a tube in your throat and had that experience you can’t understand it.”
That’s why she now shares her experience with others.
better every day
On Feb. 13, Berrios spoke at an event hosted at Southside Hospital called “Loving the Heart in You.”
She spoke about what it was like to be a young person having to go through open-heart surgery.
Berrios says she gets as much as she gives by sharing her experience. She will go to the hospital and talk to patients who had open heart surgery.
“It was like therapy for me,” she said. “It’s for me as much as the patients.”
Berrios wants others to know they are not alone, because that connection was so important to her. So she continues to share her story.
“Everybody has their story. That one thing that happened in their life that changed them, and for me this is it,” she said.
“My perspective on everything just shifted.”
Dr. Kalimi explained that now, after her surgery, Berrios has no reason to hold back.
“She can be as active and normal as anyone else,” he said.
In December, Berrios decided she would try Orange Theory, a fitness studio where members take a 60-minute class that focuses on cardio and strength training. The good thing is that exercisers wear a heart monitor during the class.
“For me, that made me more comfortable,” she said.
At first, it was tough. After a life-time shunning physical exertion, Berrios had to ease into her new exercise regime.
“It was kind of annoying when I first started,” she said. “Everybody was running and I was walking and in the red zone.”
Her mentality was that eventually she would get there with determination. After after a few short months, Berrios can now finish an entire class.
“It motivates me when I think about my first walk from my ICU bed. How unbelievably miserable and painful it was,” she said.
Berrios enjoys the outdoors, taking hikes, biking and just walking her dog. Things that she always loved to do but could never really enjoy to the fullest.
She now knows the difference between her chest hurting because she’s out of breath compared with the pain from the compression of the artery.
“That’s a real feeling that’s different than regular exercising,” she said.
Berrios sees the bright side of even the simplest things nowadays, things most people her age might take for granted.
“It’s an amazing thing,” she said.