TUESDAY, March 16, 2021 (American Heart Association News) -- When she was 12, Jennifer Tripucka was so embarrassed by the scar that runs from the middle of her stomach to the top of her chest that she asked her mother to buy gel to help lighten it.
The scar was a lingering reminder that she had open-heart surgery when she was 4 months old. Tripucka had been born with a congenital heart defect called transposition of the great arteries. The operation helped make sure blood flowed properly between her heart, lungs and the rest of her body.
Growing up, Tripucka went to the doctor at least once a year for check-ups. She also recalls not being allowed to participate in sports that would tax her heart. An exception was karate and dance — and in karate, she earned a black belt.
"My parents went out of their way to treat me normally," she said. "I've always been extremely grateful for that."
Tripucka was a high achiever, skipping ahead a grade in high school and finishing college early. She earned a master's degree in counseling psychology.
Along the way, she struggled with anxiety and panic attacks, first in grade school and particularly as she left home for college and graduate school.
Part of the problem, she's come to believe, was she hadn't fully accepted her heart history. When she talked about it, she'd tell people "I had heart surgery, but I'm all better now." She realizes now she was trying to downplay her condition and the fact she might need another open-heart surgery at some point.
And then everything changed during a routine visit to a cardiologist in her 20s. He said: "You need to have children by the time you're 30 if you want to have them because you're not going to be able to carry a child with your heart function."
"I really went into a funk with the reality of the situation and the fear of the unknown," Tripucka said. "After that, I started to research my condition and truly advocate for myself and learn what was going on.
"Patients with CHDs are unique in that you only have the information you 're given as a child … (then), you have to actively seek the adult version of what's going on, and what happened to you."
Now 34, Tripucka is married, and she and her husband are hoping to have a baby with the help of a surrogate.
She is facing her fears head on.
"You have to process it, and that can be through a variety of things, including therapy and other forms of self-care," she said. "I decided that instead of retreating, I wanted to push forward and own my story."
In 2012, she started an online lifestyle and events publication, and she uses her social media platforms to raise awareness about congenital heart defects. She also raises money and does advocacy for the Adult Congenital Heart Association and the American Heart Association.
Tripucka also belongs to an online group of people who underwent her heart operation, called the Senning procedure, or one like it.
"There's really no prognosis for people who had the Mustard or Senning operation for transposition of the great arteries," she said. "It's unsettling. So, this is a way for us to compare information. Many have pacemakers and some even have transplants as they age."
Her father, James Casson, also is in the group. He's been her advocate and supporter.
"We never had access to this kind of information even 10 years ago," he said. "It's a reality check and usually reassuring. There are of course bad cases, but then you see posts from people who say, 'I just turned 50 today and I'm going strong.'"
Casson said he feels positive about the future, largely because his daughter lives a healthy lifestyle.
"Jenny has become her own health advocate," he said. "I sit back, and I see all her achievements, like running her own company, and I just think she's amazing. If anything, I worry that she works too hard. I don't worry about her heart."
As for her scar, the gel she diligently applied worked. The puffy tissue is far less visible.
"But now it's kind of sad in a sense," Tripucka said. "It's a part of my story and my journey. Now I'm confident enough in myself to embrace the fact that I have a serious medical condition and a scar to go with it."
American Heart Association News covers heart and brain health. Not all views expressed in this story reflect the official position of the American Heart Association. Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved. If you have questions or comments about this story, please email [email protected].
By Diane Daniel