FON #HeartHero Spotlight: Amanda Harper
The Fontan Outcomes Network is a community of patients, family members, caregivers, clinicians, researchers, and supporters, dedicated to improving the quality of life and health outcomes for individuals with single ventricle circulation. Each month, we feature a member of the community who exhibits heroic qualities in service of this mission as our #HeartHero.
Name: Amanda Harper
About Amanda
Amanda is 40 years old and has tricuspid atresia, atrial septal defect, ventricular septal defect, hypoplastic right heart syndrome, and cardiac cirrhosis due to her Fontan.
She had the original Blalock-Taussig shunt in 1982 and was the second child to have the original classic Fontan procedure at a medical center in Ohio back in 1985.
Growing up, Amanda Played a few sports, including tee-ball, cheerleading, and horse showmanship. Her heart was relatively calm during her teen years.
Once Amanda grew into adulthood, she got married (20 years now) and moved to the south. After she moved, she made an appointment with a new care team. After that appointment, Amanda said, "this care team made me feel like I was just a number and they really didn't care about me” even though she felt good and wasn't having any issues at the time. That's when she fell out of care.
Six years later, she moved back to Ohio and started seeing her original heart care team. To this day, she regrets falling out of care because of the health issues she has now. Amanda currently has a pacemaker, is on oxygen 24/7, has had multiple cardiac caths and three coils, and deals with arrhythmias.
Amanda currently works 40 hours a week and volunteers for a CHD nonprofit organization as a Teen and Adult Coordinator. In her free time, Amanda enjoys meeting other heart families and patients by helping them advocate and navigate the crazy CHD world.
Along her heart journey, Amanda started a peer-to-peer chat night just for patients to have a safe space to talk. So far there are individuals from five different countries involved and she hopes to see more soon. Amanda also enjoys spending time with her family and friends, and she loves to travel.
Want to nominate your #HeartHero? Whether it’s a nurse, a patient, a physician, family member, or other, we encourage you to nominate your #HeartHero for the spotlight here.