Ten Years Post-Transplant, Emma Rothman Explores Her Organ Donation Journey in Her Debut Book

Written by Emma Rothman and Zoe Engels, Contributing Writer and Editor

Emma Rothman received a heart transplant at the age of twelve after unexpectedly going into cardiac arrest. On April 1, 2011, her life completely changed and placed her on a trajectory she is still trying to understand. She became a life-long organ donation advocate and is now a first-time author. Her book, Things My Therapist Doesn’t Want Me to Say: Ten Years Post Heart Transplant, reflects on the uncertainty Emma has experienced in her own life in the ten years post-transplant. Learn more about Emma, her book, and the writing process in the Q&A below.

Can you tell us about yourself?

I grew up in New Jersey and moved to Chicago after I graduated from Syracuse University with a BS in Food Studies and Nutrition. Before my transplant, I was living a normal (i.e., healthy) life, and as a kid, I really enjoyed playing at the beach or spending time with my friends. Over ten years later, a lot of me is still similar to that kid: I still love the beach and am pretty active in my community. In the future, I hope to build a career that intersects my love for community-building, patient advocacy, and helping pediatric cardiac patients.

Your family founded Hearts for Emma, a nonprofit that assists families of children with heart disease and supports education initiatives surrounding organ, eye, and tissue donation. What role has the organization played in your organ donation advocacy journey?

The inception of Hearts for Emma was a family initiative that served as a way to channel what everyone was feeling after my heart transplant into something concrete. We were all still recovering from our massive dose of reality about how fragile our lives are; before my heart transplant, none of us knew what organ donation or transplantation was. Hearts for Emma became the catalyst in making sure no other kid would find themselves in a similar situation to the one I had been in: not knowing about organ donation until after waking up from an unexpected transplant surgery. One of our first initiatives was providing educational materials to help get our message out about the importance of organ donation. Hearts for Emma has also led me to an amazing community of donor families and transplant recipients.

Hearts for Emma supports SODA’s HBCU outreach. Learn more about this initiative at sodanational.org/hbcu.

What was the writing process like for you?

I wrote content for a period of about five months—from September to February with the help of the Creator’s Institute, which has a partnership with my publisher, New Degree Press. For most of the five months, plus four months of revisions, I submerged myself in some of my worst and best moments as I tried to express them on paper.

Your book is being published through an independent publisher and distributor. What has the experience of independent publishing been like?

The Creator’s Institute offered weekly writing classes that took my cohort step by step through creating a rough draft of a full-length manuscript. This draft had to be finished by the last class in February, which is when New Degree Press acquired my manuscript. As an independent author, I experienced a more hands-on approach to making decisions related to the cost, layout, and content of the book.

What inspired you to share your story and write this book now?

In 2021, my heart had a big birthday and turned ten. Then, a month later, I graduated college and lost the structure school had provided for the last eighteen years of my life. The “big ten” was supposed to clear me of all my trauma and signify that I was ready to take on the next ten. Beginning the book-writing journey around my ten-year transplant anniversary was, unquestionably, significant. However, trying to understand my past because I missed many of the medical decision-making moments that changed my life, was more treacherous than the neat closure I was expecting.

What challenges did you encounter during the writing process?

Many people ask me this specifically about writer’s block given that I had such a short amount of time to produce content. While I, unfortunately, don’t have an easy equation on how to overcome this hurdle, what I will say is that writer’s block is usually a symptom of the problem and not the root of it. For me, whenever I had writer’s block, it was because I wasn’t ready to face, or physically write out on paper for everyone to see, what I was feeling at the time. This experience made it necessary to create a distance between me (as writer) and the story because it was emotionally draining trying to synthesize thoughts that I hadn’t even come to terms with or admitted to myself.

To start learning more about organ, eye, and tissue donation check out our FAQ.

What do you want readers to walk away from the book having gained or learned?

There’s more to organ donation than just feeling really grateful to be alive. Under the surface, it can be an internal chaos of a thousand different emotions. There is no right or wrong way to feel and I don’t want anyone to feel alone in managing their internal chaos.

How do you define success?

I want the book to be a resource and vehicle for connection—an invaluable resource that is really hard to come across in the digital age because we are chained to communicating through likes, reposts, DMs, and even emojis. But if my book can intercept that way of communicating and offer time for genuine conversations that may or may not relate to organ donation or the messiness of life, then I would call that a success.

Like Emma, are you passionate about organ donation advocacy and education? You can pursue that passion and apply to host an event or start a SODA chapter here.

What have been some of your takeaways from writing and publishing your book?

Since publishing my book, I have never felt more myself. I thought I would feel relieved or even closure from all this, but the real takeaway is that this journey helped me feel okay with myself and with where I’m at in this stage of my life (on most days). I was terrified to write so vulnerably, because even in past job interviews, I wouldn’t disclose that I’m immunocompromised or a transplant recipient. The thought of a potential employer seeing me as less than or a liability led me to keep my mouth shut. Now, it’s easier to talk about my past and own my past because my truth is out there for everyone to read.

What has the response to the book been like thus far, since the eBook release on Amazon?

I didn’t expect to receive so many calls from people being blown away by my honesty and vulnerability. It has been incredibly rewarding hearing people share the conversations they are having about the book and also using the book to have conversations—that is powerful and fills me with so much pride and relief that readers can relate to my stories.

The Things My Therapist Doesn’t Want Me to Say eBook is now out on Amazon. For updates, including announcements about the print launch of her book, visit emmarothman.com. Congratulations, Emma!