Heart Valve Patient Ambassador Jen Hyde Shares Her Story Of SurvivalA congenital heart defect required Jen Hyde to have two open-heart surgeries, including heart valve replacement by the time she was 25. Now, the Brooklyn poet and artist is using her experiences to channel her art and connect with other survivors.
Hyde, now 30, was diagnosed with Tetralogy of Fallot at birth, a congenital heart defect that impairs the heart’s ability to move oxygenated blood to the rest of the body. She was born without a pulmonary valve and with a hole between her left and right ventricles, allowing some oxygen-poor blood to travel into the aorta and to the body, rather than to the lungs first.
Before Hyde turned 3 years old, doctors performed open-heart surgery to insert a shunt that would help push the blood from the left to the right side of the heart so that it could provide adequate blood flow to the lungs. They told Hyde’s parents that she probably wouldn’t be physically active growing up, but would likely be fine otherwise.
Growing up in Orange County, California, Hyde got annual check-ups with a cardiologist, and had a note excusing her from strenuous physical activity in school, but that was pretty much it. She preferred academics to running or other organized sports, but participated in cheerleading and dance.
In 2009, Hyde was working on her first book in China when she learned she was accepted into a graduate program in New York. She returned to the United States, first visiting her parents in Southern California over the holidays. While there, her mom nagged her to get a check-up with her cardiologist, just to make sure things were okay. They weren’t.
After years of being fine, Hyde now had signs of pulmonary hypertension, a condition in which the heart has to work harder to pump blood into the lungs to pick up oxygen. She hadn’t even noticed any symptoms, but her doctor urged her to immediately find a cardiologist in New York.
Her condition was closely monitored for six months before Hyde underwent heart valve replacement. The surgery in July 2010, which coincided with Hyde’s summer break, went well and Hyde’s parents came to assist during her three-week recovery. That support, along with a strong network of friends proved important in the process.
“It was amazing how many people came to visit,” she said. “It was really nice to see how many people care about you and want to make sure you’re okay.”
After three weeks Hyde felt strong enough to take the subway by herself to meet friends, an empowering experience. She returned to her university program on time, though took things slow initially to allow her body to rest.
While she hadn’t noticed any symptoms prior to her pulmonary hypertension diagnosis, Hyde says she has more energy these days.
“I can run down the stairs to catch a train without getting out of breath now,” she said. “I just feel like I’m in better shape.”
Hyde says she is better tuned into how her body is feeling, staying alert to any signal that her condition may again be deteriorating. She is grateful that she hasn’t experienced any complications, and was glad to have maintained a good relationship with her doctors over the years so that her condition could be caught in the early stages.
Hyde now has a bovine heart valve, which doesn’t require medication, but will one-day require some type of reinforcement. The transplant, and the uncertainty of what will happen next has become a point of deep reflection for Hyde, and professional inspiration: she’s currently working on her second book, a lyric memoir on her experience and the stories of others. The book is a finalist for the 2016 Creative Capital grant in literature.
“For me, it’s a whole new set of vocabulary and research that I can engage with,” she said.
Hyde began volunteering with AHA a year ago, and is now a Heart Valve Patient Ambassador, sharing her story and connecting with others living with heart disease. It also gave her a chance to learn more about how her heart valve was made and to meet the women who were involved in the process. Being an ambassador has been another way to gather and disperse information, and an opportunity to help make the experience better for others.
“I probably learn as much from the experience as I give back,” she said.
Jen’s Tips for Post-Surgery Recovery
- Secure a go-to person to help you the first few nights you are home from the hospital to help with anything you might need during this time. This can be a parent, a significant other, a best friend, or someone else whom you trust.
- Keep a journal to jot down how you are feeling everyday once you get over the first few days you are home (you probably won't want to do much during that time). I find that keeping a list of my emotions helps me maintain positivity.
- Share your diagnosis and treatment with others if you feel comfortable. I find that making the experience part of my story empowers me to be better engaged with my life!