As an athlete, Carrie Deutsch loved to stay fit and to compete. So when a serious heart condition sidelined her for over a year in her mid-20s, she didn’t know what to do.
“I was devastated,” she says. “I struggled so hard. I even went back to my cardiologist for follow-up appointments and told her, you know, this was such a big part of my life. I identify as an athlete as far as who I am, and I felt like that was taken away from me.”
Born with a congenital heart condition, Carrie lived a mostly healthy life. But in her mid-20s, she needed open-heart surgery to repair her condition. And shortly after her procedure, another heart condition came up — prolonging her recovery time.
Although that time was difficult, the support Carrie received from her medical team, family, and friends helped her through it.
She eventually returned to her active lifestyle, and today she feels stronger than ever.
“I’m doing more. I’m faster,” she says. “So it did at least enable me to look back and say, ‘Wow, this was a lot, but it was the right decision, and I’m glad I went through with it.'”
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‘This Can’t Be Real’
Carrie was born with pulmonary stenosis, a congenital heart defect. It occurs when the pulmonary valve that connects the right ventricle and pulmonary artery is too small. This can cause the right ventricle to work harder to pump blood out to the lungs, leading to extra strain on the heart.
“It is quite common, actually,” says Arvind Hoskoppal, MD, director of the Adult Congenital Heart Disease Program, a joint program between UPMC Children’s Hospital of Pittsburgh and UPMC Heart and Vascular Institute.
“It could happen in isolation, where someone just has a narrowing, or it could happen in association with other forms of heart disease. If it’s in isolation, the blood has difficulty to get into the lungs and the right heart is working hard to pump the blood because it has to pump against the obstruction.”
Carrie had surgery at 5 months old to relieve the narrowing of her valve.
From there, she lived a normal, healthy life for the next two-plus decades. She had yearly checkups on her heart, but otherwise, she felt healthy. She competed in sports, playing soccer through high school, taking up endurance running in college, and joining CrossFit after college. She ran multiple marathons and never suspected she was anything less than healthy.
But in December 2016, on one of her regular checkups, doctors noticed her heart had become enlarged. This can happen after an earlier surgical procedure, Dr. Hoskoppal says.
“When you relieve the narrowing, sometimes you end up with a leakage of the valve,” Dr. Hoskoppal says. “When the valve leaks, when your heart pumps blood, a certain percentage of it comes right back. Over a period of time, to accommodate that extra volume, the heart gets enlarged.”
Carrie needed open-heart surgery to replace her pulmonary valve. Without the surgery, she was at risk for heart failure in the near future.
“My first thought was, ‘This can’t be real,'” says Carrie, who was 27 years old at that time. “I had worked out that morning. I was teaching fitness classes part-time as a hobby. I was supposed to go teach a few in a few hours. So, I just didn’t think, for feeling this good, that I could have something like this going on.
“At first, it’s disbelief, then you feel a little bit like a ticking time bomb. And it’s just kind of, ‘Now what?'”
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‘You Just Don’t Know When It’s Going to End’
Carrie underwent valve replacement surgery in March 2017. Surgeons replaced her pulmonary valve with a bioprosthetic valve from a pig.
“‘Should I eat bacon ever again?’ was actually one of my first thoughts,” Carrie jokes.
Although she says she was nervous and didn’t know what to expect, the surgery went successfully. She believed that given her age and overall health, she would be able to return to health and start competing athletically again within a month or two months.
But that’s not what happened.
Carrie developed a form of pericarditis known as Dressler syndrome. The condition, which is inflammation of the sac around the heart, is likely an immune response that can happen after viral infections or other causes, including heart attacks, chest injuries, autoimmune diseases, and heart surgery.
“The pericardium is what covers the heart, and there’s a little bit of fluid in the space,” Dr. Hoskoppal says. “When you undergo a surgery, you have to cut through the pericardium to get to the heart. Some patients get this irritation of the pericardium, and there’s varying degrees of the irritation.”
Dressler syndrome caused Carrie significant chest pain and fluid build-up around her heart. In addition to taking medication, she also had to keep her heart rate down — meaning no workouts. She had to put the active part of her life on hold.
“I was immediately hopeful, and then not hopeful,” she says. “You just don’t know when it’s going to end.”
‘Strengthening That Optimism Muscle’
Carrie didn’t know exactly what to do. She was getting treatment for the pain and other symptoms of her condition. But she also was dealing with the uncertainty of when she would get healthy again. And that took a toll on her.
“Every time, every week, I would go get blood taken and just sit there with my fingers crossed, like, ‘What’s it going to say? Is it going to be better?'” Carrie says. “There’s no schedule. You don’t know if you’re getting better or not, or can you go back in a month or in a year. So that unknown and waiting was one of the worst parts.”
Carrie says she was getting support from her loved ones — her family as well as her friends in the CrossFit community.
But she also sought a different kind of support, speaking to a palliative care specialist and a therapist about her mental health struggles.
“(It helped) get that optimism back that this was going to end and I was going to be able to overcome it,” Carrie says. “Because you just get tired of that optimism. It’s hard to keep it up so long. So kind of strengthening that optimism muscle was a big part of it for me.”
In addition to restoring Carrie’s positivity, the mental health counselors helped her recognize that she had an identity beyond just being an athlete.
“Looking back on it, I wish I would’ve done it earlier,” she says. “I wish I would’ve had those tools in place at the start to know that that’s going to be the kind of support that I needed. But getting it a little bit later is obviously better than never. And I think it’s something that everybody should do as part of their planned recovery, no matter what they’re going through.”
‘That Confidence Edge’
After about a year, Carrie’s pericarditis went away thanks to her ongoing treatment. That meant she could return to her CrossFit gym again.
“I was definitely cautious at first,” she says. “While I was so eager to get back into it, I literally wasn’t the same person I was before. So there’s a little nervousness as far as, ‘Can my heart still keep up with what I think it can?’ So it took me a little while to get started. But at the same time, after going through what I did, it gave me a little more fire.”
Carrie didn’t want to be limited by her previous health condition. So she reached out to her CrossFit coaches about increasing her participation in the sport.
Her doctors told her she would feel stronger after her surgery, and Carrie felt that. She started out doing some local competitions with her friends, then kept building. She started looking at CrossFit as a competitive outlet instead of just fitness.
After about another year of building up strength, Carrie started competing at a high level. She won individual competitions for the first time and now is focusing on winning team competitions.
“Before my surgery, I had been a little bit more of a bystander in the sense that I didn’t trust myself to be someone that could win,” she says. “I knew I would be a good teammate and I was a good everyday athlete, but over the course of both the mental growth that I had done and then the extra year now that I had done physically building myself back up, I really had that confidence edge that I think I didn’t have before. And so, things that I would never have imagined I was going to be able to do before, I was starting to check off those boxes and hit those milestones.”
Dr. Hoskoppal says it is common for patients to get even stronger after surgery, and it underscores the importance of getting lifelong follow-up care. The Adult Congenital Heart Disease Center at UPMC Children’s provides ongoing, long-term care to adults like Carrie who are born with congenital heart conditions.
Carrie says through her experiences, she learned how to be resilient and to focus on the long game in her recovery.
“If I was going to tell somebody that was going through the same thing, I would say, get all the help you can,” she says. “It’s hard. Everybody focuses so much on the physical healing, and I want to physically feel better, but the mental health aspect of it is huge. And you need to get people on your side to help you through that.”
The UPMC Heart and Vascular Institute has long been a leader in cardiovascular care, with a rich history in clinical research and innovation. As one of the first heart transplant centers in the country and as the developer of one of the first heart-assist devices, UPMC has contributed to advancing the field of cardiovascular medicine. We strive to provide the most advanced, cutting-edge care for our patients, treating both common and complex conditions. We also offer services that seek to improve the health of our communities, including heart screenings, free clinics, and heart health education. Find an expert near you.