This story was written by Emma, heart transplant recipient
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 who I had never met before. I heard the words ‘heart transplant’ and ‘hypertrophic cardiomyopathy’ for the first time. What my family and I thought was a viral infection were symptoms of heart failure and I went into end-stage cardiac arrest at my doctor’s office, 6 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, life as a transplant recipient. All the stuff that came after my surgery, the chronic stuff, hit me by surprise. I had thought I was done with all the heart stuff, I had the surgery.
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 ten 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.
Which made it easy to convince myself that I should be done with all the healing I needed to do after receiving an emergency, life-saving heart transplant at the age of 12. As the anniversary came and went and I graduated college, I realized that I had just begun to come to terms with my identity, a heart transplant recipient.
After celebrating living with my heart for ten 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 does not 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 that manifests from receiving a life-saving heart transplant at such a young age; that I couldn’t have prepared for. My hope is that my book, Things My Therapist Doesn’t Want Me to Say, Ten Years Post Heart Transplant, will normalize these conversations that I wish I 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.
You can pre-order my book, Things My Therapist Doesn’t Want Me to Say, Ten Years Post Heart Transplant, here! One of the reasons I sought out New Degree Press (my publisher) is because they help writers build community by bringing people and ideas together. It truly takes a village to publish a book and it would be an honor to have you on this journey with me.