From 'Othered' to Acceptance: One Teen’s Journey

By Emma Rothman

My name is Emma, and I had my heart transplant 11 years ago on April 1, 2011. 

When I was 12 years old, I woke up from surgery in a hospital bed surrounded by doctors whom I had never met before. I heard the phrases "heart transplant" and "hypertrophic cardiomyopathy" for the first time. What my family and I thought was a viral infection were actually symptoms of heart failure; I went into end-stage cardiac arrest at my doctor’s office, six days before receiving my life-saving transplant. 

Before my transplant, I had never met anyone with a transplant or heard of organ donation. I was learning about what a heart transplant is and how to take care of it after my surgery had already happened. Overnight, my body changed, and I never spent time adjusting to my new normal, which was all the stuff that came after my surgery -- the chronic stuff. 

Growing up with a heart transplant was difficult at times because there weren’t many people my age who understood what I was going through. To be honest, I barely understood what I was going through. So, I spent most of my recovery time over the last 10 years trying to get back to able-bodied people's "normal" physical function because I didn’t feel or look like a sick kid anymore. I wanted to distance myself as far as possible from my health and transplant identity because it made me feel "othered."

However, after celebrating living with my heart for 10 years, I was finally ready to start understanding my relationship with my heart transplant. It was around then that I started to document this journey, often writing in my journal about the growing pains of being a student for the last 18 years and now needing to build a new structure that doesn't revolve around school but keeping my heart and body healthy. 

My first book is inspired from my journal entries and conversations I had with my therapist about how different taking care of my heart transplant is now, as an adult, than when I was a 12-year-old. My stories reflect on my past and the current uncertainty in my life from receiving a life-saving heart transplant at such a young age, which I couldn't have prepared for. My hope is my book will normalize these conversations I wish I had had when I was 12 and create a platform to find and connect with other transplant recipients who also had their surgeries when they were kids.

For more information on this health topic, visit heart.org.

Would you like help dealing with heart or stroke conditions -- either yours or someone else’s? Join us in the AHA’s Support Network! We are an online community of patients, survivors and caregivers where you can share your experience while getting encouragement, hope and informational resources from others who have been there. Membership is free and the benefits can be priceless. Register today.