The Heart of a Warrior: A Funky Heart Interview

My friend Eliza recently took time to answer my questions about growing up with a heart defect, exercise, and participating in the Bolder Boulder 10K road race.

Born with Pulmonary Atresia with a Ventricular Septal Defect (VSD), Eliza underwent four heart operations as a child.  “I was never the most athletic kid on the block,” she tells me, “but my parents did encourage me to try lots of things.  Even though P. E. (Physical Education) was never my best or favorite class, I’m very glad that my parents followed my cardiologist’s suggestions and never kept me out of it.”  Eliza participated in ballet for eight years and was on the softball team for a year in middle school.

Her biggest challenge in 4th and 5th grade was trying to keep up when her school participated in the President’s Physical Fitness Challenge. The Challenge exposed her weaknesses: “I remember being reduced to tears when I didn’t understand how I was so bad at sit-ups and the mile run. It never occurred to me that it was because of my heart and the surgeries I had for it.”  Luckily she had a great P.E. teacher  in elementary school who emphasized that the important thing was to get outside, move around, and have fun.  “(She) told me that if I wasn’t dirty when her class was over, then I wasn’t having enough fun.  I’ll always remember that.”

Eliza also had another Physical Education teacher in high school who “taught me basic physiology, anatomy and the benefits of exercise.  Without those two gym teachers’ encouragement and knowledge, I certainly wouldn’t be as healthy as I am today.”

After graduating from both high school and college, Eliza took internships in a big city and started on a path that would lead her to the Adult Congenital Heart Association (ACHA). Describing those days as “a very dark time,” she tried to deal with adulthood, work, finding friends and doctors in a new city, and the realization that her heart wasn’t permanently fixed, all while being hundreds of miles from home. “I thought that I was entering a whole new, exciting world, but I ended up feeling very alone on so many levels.”

After a false alarm with her heart and without any guidance from her doctor at home, she finally found an Adult Congenital Heart Defect (ACHD) Cardiologist. A month or so after her appointment, she received a postcard in the mail from her new doctor with information about the Adult Congenital Heart Association.  She was curious to find out how other adults with congenital heart defects managed their health and how that worked in their lives.

Returning to Colorado, Eliza got involved with the group that would eventually become the Denver-Metro Area chapter of the ACHA. Little did anyone, especially Eliza, know what would come next!

Boulder, Colorado is the home of the Bolder Boulder, a 10-kilometer (6.2 mile) road race through the streets of downtown Boulder. Described as a “citizen’s race” because the majority of participants are not professional runners, the race is organized in staggered starting groups called “waves” that allow people of many fitness levels to compete at their own pace. The minimum requirement is to be able to walk 6.2 miles in two hours.  The event concludes at the University of Colorado’s Folsom Field with a Memorial Day celebration after the citizen racers take their seats in the stands to watch the professionals runners compete in their own 10k event.

“The atmosphere is so much fun!  Besides the huge number of racers, (53,000 participated in the 2009 race) there are radio personalities, belly dancers, celebrity impersonators, rock bands, people with their sprinklers on, Slip & Slides, and neighbors sitting in lawn chairs cheering on all of the racers as they pass.”

And that’s just the bystanders. A good portion of the runners let their sense of humor come out – there is no telling what you’ll see along the course. “There are people who dress up in funny costumes in all of the waves,” Eliza continues.  “There’s a guy in a gorilla suit who is usually in the very first wave.  I’ve seen people in frog costumes playing leapfrog in the walking waves. This year I saw a group of girls dressed like an 1980’s band and another group who was trying to do the race as a 3-legged race.  They have water and Gatorade for the racers at every kilometer and race officials all over to make sure everyone has a safe and really fun time.”

Eliza had been walking the Bolder Boulder course since she was a child, usually with her mother. “The first time I did the Bolder Boulder I was probably ten years old. It was my mom’s idea – she wanted to walk it and thought it would be a fun thing to do with me, even though she is the least athletic person in my family. I walked the race with her on and off for years until I decided to do it for my own health in 2006. “

“That year I invited family, friends and a few people from the local Adult Congenital Heart Defect (ACHD) group.  We thought, ‘Man, it would be great if we could do this and officially raise awareness for the ACHA!’”

ACHA president Amy Verstappen, Eliza and the national staff worked together to create the legal documents needed to make it an official event. The ACHA’s Bolder Boulder team was off and running!

“Given the economic climate this year, I am very proud that we raised over $1,300 even though it’s significantly less than what we’ve raised in previous years.  In 2008, we raised over $3,000 for the ACHA.  This year we had a record number of ACHA racers – 24!.”  (That number includes both Congenital Heart Defect (CHD) Survivors and supporters.)

A handful of ACHA members and supporters have come to Colorado from out of state to participate in the festivities. This year, there were people from California, Ohio, New York, Illinois, Pennsylvania, and South Carolina.

While those numbers are impressive, they’re not the essence of the event for Eliza. “Since I decided to do it (participate in the Bolder Boulder) for my own health, it’s been a positive goal that’s kept me exercising regularly,” she says. From her enthusiasm when she talks about it, you can tell Eliza is happiest about getting other CHD survivors to be active. “I’ve been thrilled to find out that our participation not only inspires our racers, but also people across the country and other ACHDers who aren’t quite able to do a 10k to figure out how to incorporate some exercise into their lives. I love that something that started out as a personal goal for me has mushroomed into an avenue and an inspiration for so many in the ACHA to be as healthy as they can be!”

As Adventures of a Funky Heart! readers know, I often ask interview subjects, “Do you have any wisdom or advice for young parents of Cardiac Kids?” Eliza didn’t disappoint:

“Medical interventions like surgery and caths (Catherizations) can help our hearts to function more normally, but that willingness to get out of the house, to get up when we fall down, to actually move around and exercise itself is what strengthens even hearts like ours and gives us the confidence, mental and emotional fortitude to manage our heart health as we get older.”

“For everyone, but especially for kids with CHD, exercise isn’t just about moving your body and making is stronger.  If the adults around you have the right attitude, it’s about having the self-confidence to try another way when you reach a roadblock.  It’s about learning to maintain and trying to top your own personal best. It can be about learning to be part of a team.  It’s about kids (teens and adults too) who have known what it’s like to feel incredibly physically weak and vulnerable, finding ways to feel physically powerful, able, strong and independent.”

As far as specific advice, Eliza says, “Anytime they are excited about doing something physically active, go with it! As long their cardiologist thinks it’s healthy for them, let them do the mile run – even if they end up being the last person who finishes it. It’s even more important for us to learn how to handle minor scrapes & bruises than most people because we’ll face so many physical challenges in our lives.  Resist the urge to run and pick your kids up immediately when they fall.  We need to learn that resilience. Let them climb trees. Let them fall and scrape their knees. ”

Eliza reminds us of a very hopeful statistic: “At least ninety percent of children born with congenital heart defects today will be adults someday. Always assume that your child will be in that ninety percent and treat them accordingly. Don’t forget to daydream about what you hope to do with your child and the kind of person that you hope they will become.”

ENDNOTE: Eliza was recently accepted into graduate school to study health promotion, partially inspired by her love of enabling CHD Survivors to challenge the Memorial Day race over the last few years.  She’ll be leaving the Denver area, but I’m hopeful that no matter where life takes her, she’ll always find her way home just in time to take on the Bolder Boulder!

I hope you’ve enjoyed meeting my friend;

The back of Eliza's 2008 Bolder Boulder shirt

Tags: 10K, ACHA, Adult Congenital Heart Association, Bolder Boulder, Boulder, CHD, Colorado, Congenital Heart Defect, Folsom Field, Heart Defect, Pulmonart Atresia, Pulmonary Atresia with Ventricular Septal Defect, Pulmonary Atresia with VSD, Road Race, University of Colorado, Ventricular Septal Defect, VSD