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“I knew my heart; it knew me”: A patient reflects on her disease and transplant

Young at heart. He has a heart of gold. She's a heartbreaker.

So often we used the word "heart" to define who we are or how we feel -- but how much does the heart we're born with shape our identity? In a talk yesterday morning at Medicine X | ED, ePatient Leilani Graham tackled that question and shared her experience with heart disease and transplant.

At the age of 13, Graham suffered her first cardiac arrest. “In the span of about 30 seconds my whole world changed," she told the audience. Over the next 10 years, she struggled with the rare condition hypertrophic cardiomyopathy and -- as you'll hear about in the clip above -- by the time she reached her twenties she had already suffered four cardiac arrests and experienced countless complications.

When her medical team decided a transplant was the best next step, Graham was faced with mixed feelings of hope, apprehension and gratitude. A conference like Medicine X is all about opening up and sharing difficult truths, and Graham did just that -- expressing her misgivings about being transplanted even though donors can appear ungrateful if they do. “It’s a difficult emotion," she explained. "You want the call so badly. But you also don’t want the call.”

After her transplant last March, Graham suffered even more side effects, which severely affected her quality of life. “I didn’t want this. I didn't choose this. This wasn’t me. Everyone thinks you’ll be really happy to have a new heart" -- but Graham was left with the feeling that her identity had changed. “I knew my heart," she continued. "It knew me. And then this happened -- this blessing that I didn’t ask for.”

Though her path wasn't one that she would have chosen she's come to realize that there is great meaning in the fact that it's uniquely hers. “Where I come from has been rough and heavy but it has also been rare and beautiful. It has been statistically pretty darn improbable. But it’s been mine.”

It's also clear that regardless of what beats in her chest is that she does indeed have a great deal of "heart." And she encourages others struggling with complex medical issues to find their fight, too. “When my eyes close at the end of my life I want to know that I fought my damnedest to keep them open. And I want to know that you did, too.”

Previously: On learning, the patient's voice and the power of stories: Stanford's Medicine X | ED begins

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