Jara’s Story
Optimistic Heart: Navigating Life with Fontan Circulation – Jara’s Inspiring Journey
Jara is a dedicated member of Little Hearts Matter and currently studying at Birmingham University. She is undertaking research which draws from her lived experience as an adult with a single ventricle condition. Her research delves into the vital need for tailored social support for adult Fontan patients, often referred to as “pioneer patients.” While a definitive cure for single ventricle patients remains elusive, many individuals fortunate enough to reach adulthood after undergoing Fontan procedures during childhood face a myriad of complexities.
Navigating life with only half a functioning heart brings forth a host of challenges, including concerns related to career, finances, education, family planning, life expectancy, and mental well-being. Recognizing the growing imperative to explore additional avenues of social care to enhance their quality of life, Jara is committed to making a difference.
Her overarching goal is to investigate and implement customized social support systems. Currently, Jara is focusing on organizing 1:1 interviews with 20-39-year-old Fontan patients in the UK. This collaborative effort aims to address the unique challenges these individuals encounter in their daily lives and pave the way for a brighter future through applied health research. Jara is an inspiring example of personal experience driving change within a community that need it the most.
LHM: Let’s start from the beginning. Can you tell us about your childhood experiences that played a role in shaping who you are today?
Jara: I was born in East Berlin but spent my childhood in Schwerin, near the Baltic Sea. Most of my childhood memories revolve around playing in the garden with my sister and nearby cousins. We had a bunch of animals—bunnies, guinea pigs, and cats. Also, I developed a love for horses at the local riding club. It was around the age of 7, and I’m still an avid horse rider today. The experience taught me responsibility and fostered a deep love for the outdoors.
Influential Figures: How Jara’s Parents Shaped Her Personal and Professional Path
LHM: Who were the most influential people in your life, and how did they contribute to your personal and professional development?
Jara: My parents have been my biggest influencers. They supported all my dreams, giving me the confidence to move abroad, pursue a Ph.D., and have a full-time career. Despite putting me in “cotton wool” more than I wanted, their unconditional love and support made me feel I had the same chances as my healthy peers.
LHM: Did specific cultural or familial influences shape your values and beliefs?
Jara: Absolutely. Being organized, a classic German stereotype, is true for me. The German Reunification was a significant time for my family. We had to start our lives over, yet I don’t remember any complaints. This practical and optimistic attitude is still an integral part of me today.
Passions Explored: Horse Riding, Traveling, and the Pursuit of a Ph.D.
LHM: Moving on to your passions. What are your main interests, and how did you discover them?
Jara: I’m passionate about horse riding and traveling. My sister’s interest in horse riding got me started, and it perfectly combines my love for exploration and being outdoors. My current fulfillment comes from my Ph.D., giving back to the congenital heart community and hopefully improving the quality of life for those with Fontan circulation.
LHM: Can you please share some of your proudest achievements or moments.
Jara: In 2018, I joined Medtronic’s Global Champions Team for a 10-mile run in Minneapolis. It was inspiring, especially since I have a pacemaker from Medtronic. Training was tough, and I had to take breaks during the run, but crossing the finish line with others facing severe health conditions was truly motivating. I asked my mom to join, making it one of the most inspiring trips I’ve ever done.
LHM: Balancing personal and professional life can be tricky. How do you manage, and what strategies keep you well?
Jara: I love being outdoors, so I ensure a 30-45 minute walk daily. And for a proper break, I go on remote holidays, where work can’t reach me. It’s my way of disconnecting from the screen and recharging.
Overcoming Adversity: Jara’s Stubbornness and Warrior Spirit
LHM: Moving to challenges. What significant challenges have influenced your personal and professional growth?
Jara: Balancing life with a heart condition is tough. It’s a constant challenge not to let it define everything. Finding the right balance is a difficult act, not always under my control.
LHM: Can you share a turning point or a learning experience that profoundly impacted your life journey?
Jara: In 2015, I opted for open-heart surgery to update my Fontan heart. The recovery was tough, feeling helpless and weak, but it taught me the value of time and made me incredibly optimistic.
LHM: How do you approach adversity, and what strategies help you overcome obstacles?
Jara: Fontan patients, including me, share stubbornness. It’s a fight for survival, and being a warrior is the only way.
LHM: Finally, being a member of Little Hearts Matter – what does it mean to you?
Jara: Little Hearts Matter provides crucial Fontan-specific support, making me feel like I belong to a supportive community. The Fontan-specific support is invaluable.
Follow Jara’s inspiring journey on Instagram: @optimisticheartblog and her blog
Optimistic Heart – Don’t let a heart disease hold you back (wordpress.com)