Hearts for Emma was founded about a year after my transplant. Navigating my relationship with Hearts for Emma and how it often reflected my relationship with my transplant motivated me to start writing my memoir. In April 2021, I celebrated living with my transplant for a decade and was ready to have a conversation, in my style -intimate and unfiltered- about what it was like growing up with a heart transplant without considering myself chronically ill. My debut memoir, published in November 2022, Things My Therapist Doesn’t Want Me to Say: Ten Years Post Heart Transplant, is the unfiltered story exploring feeling at home in my body while grappling with the acceptance that my identity as a transplant recipient is incurable. I question the narrative of ‘anything is overcomable if you just try hard enough’ and how to live while dying.
I hope that in sharing my prescribed experience from April 1, 2011, other adolescent and young adults, especially transplant recipients, will feel seen, validated, and encouraged to have those tough conversations with their loved ones whether it is about registering to be an organ donor or that chronic-messy-thing that is hard to talk about.
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Hi, I'm Emma
I am navigating my twenties and figuring out how to live authentically while I’m dying. When I was 12 years old, I went to Beth Israel Hospital in Newark, New Jersey for what was supposed to be a quick blood test and planned on heading to school afterward. However, I did not make it to school that morning-- I went into cardiac arrest in my doctor’s office. Quickly thereafter, I was rushed to the pediatric cardiac intensive care unit at Morgan Stanley Children’s Hospital in New York City where doctors stabilized me through a medically-induced life-saving coma. I showed no prior symptoms and was not born with Congenital Heart Disease (CHD) heart failure but by the evening, I was diagnosed with end-stage heart failure. It became apparent that I would need an immediate heart transplant to save my life because hypertrophic cardiomyopathy was causing my heart to fail.
I was then listed on the organ donor registry list for just seventeen hours and on the early morning of April, 1st, 2011 I received an extraordinary act of kindness and had a heart transplant. This was my introduction to organ, tissue, and cornea donation and transplantation. It was not planned or expected; in fact, I did not know what an organ transplant was until after I woke up from my medically induced coma and learned I had a heart transplant. My last memory was going into cardiac arrest in my doctor’s office in New Jersey.
In just the 15 days I was in the hospital, my family’s life abruptly changed. Our community’s outpouring of support is one of the reasons we were able to able to make it through my hospital stay. That love and support continued to carry our family forward post-transplant and readjusting to our new normal.