Athena’s story: Sharing her journey through transplant

In her own words, a transplant patient’s personal essay

One year ago this week, Athena Dieuanh Tran received her heart transplant at Lucile Packard Children’s Hospital Stanford and was one of the first patients to be moved into our new hospital. She decided to document her personal story in writing, going back several years before her transplant. Her narrative offers a firsthand perspective of the years leading up to her diagnosis, her stroke, and her life from when she was placed on the transplant waiting list until the day her transplant finally came. Following is an excerpt of her full essay. Athena says the experience changed who she is for the better. We thank you, Athena, for having the courage to share your story.

I am the girl with a history of restrictive cardiomyopathy. I am the girl who lived.

I grew up as a well-rounded girl in a somewhat typical Silicon Valley family. In my family of four, my parents are first-generation Vietnamese refugees. My brother and I received good grades. We have an active and fun life. We traveled all over the United States and some foreign countries. We’ve camped, kayaked, hiked, biked, skied, and so much more.

2014—I was in fourth grade, we had physical education (PE) on the first day of school. “Two laps,” said the teacher. So alongside everyone else, I started running. Halfway through, I started to feel a pain in my chest. My heart was racing. I bent over to take a breath. The PE teacher yelled at me to keep moving. I fought through the pain and finished up

See, all my life, I had been afraid of pain, failure and my parents’ disappointment. When I got home that day, I didn’t say a word about my running to my 55-time marathon-runner dad. I figured it was just an off day, since at that point I hadn’t run in a while. But then again, every day seemed to be an off day. I was always short of breath and dizzy, and sometimes I felt nauseous. But I didn’t say anything.

I made it through the summer and half of my fifth-grade school year until about January, when apparently, my heart couldn’t take it any longer. I fainted on the track. Classmates and friends later described it to others as “collapsing to her knees and falling over.” I don’t really remember anything. I woke up and got into a wheelchair.

We went back to our family doctor.  She did not find anything abnormal with me. After getting the second notice from my school, my dad took me to his cardiologist. I watched as the nurse put the cold stickers on me. They attached cords to the stickers. A pink paper came out of the printer with black lines on it. I later learned that this is an EKG (electrocardiogram).The doctor looked at the paper. He grabbed a model of the heart off the shelf. He talked to my dad first, and then he told me I might have a hole in my heart. We left with a doctor’s note for PE and drove home in silence.

The team of cardiologists at Lucile Packard Children’s Hospital Stanford ordered an echo, short for an echocardiogram, which is a more advanced study than the EKG because it uses sound waves to detect abnormalities in the heart. It uses a gel and an ultrasound probe. When the technician reported to the doctors, the team made an immediate diagnosis. I had restrictive cardiomyopathy. I was immediately put on a heart transplant list. Both my parents and I were in denial, trying to downplay the concern of my disease, hoping that I will get better,

Continue reading Athena’s personal story >

Thanks to the care teams, support staff, volunteer and donor communities who have made our beautiful new building into a place where we can deliver the finest medical care possible and offer hope and healing to our patients and their families.