Justin’s story

Sharing his journey through transplant

Justin Wang, 15-Years-Old

At just 15-years-old, Justin Wang has already built a bucket list of the things he wants to see and do in his lifetime. That’s because for Justin, health complications including the possibility of needing a heart transplant is something that has been part of his life for as long as he can remember. When he was two years old, he was diagnosed with Loeffler’s syndrome, a rare disease of the heart lining that causes the walls of the heart to be rigid, which is caused by the accumulation of eosinophils (a variety of white blood cells) in the heart’s ventricles.

When he was 4-years old, Justin underwent his first open heart surgery at Lucile Packard Children's Hospital Stanford by cardiothoracic surgeon Frank Hanley, MD—a Glenn procedure to remove scar tissue from his right ventricle, and reroute blood flow to his lungs to help relieve his symptoms of congestive heart failure. Justin’s parents were told that by the time he was a teenager, additional surgery would likely be required, and most likely he would eventually need a heart transplant.

In the years that followed, Justin’s parents focused on keeping him active and healthy, while he battled other complications associated with his Loeffler’s syndrome. But in late 2017, his health began declining rapidly, including heart arrhythmia, extreme fatigue and loss of appetite. Following four stays in the hospital’s ICU, Justin’s care team at Packard Children’s determined he would need a heart transplant to survive, and listed him on April 10, 2018.

The family began discussing plans for the transplant waiting period. Justin was listed as a Status 2 patient on the heart transplant list, meaning he was deemed healthy enough on oral medications to remain at home while he waited. Doctors told them it was common to take months or years for patients in Justin’s position to receive a donor match. In fact, it had been four years since a Status 2 patient received a heart at Packard Children’s.

The Wang family started to plan an alternative schedule for high school and college, thinking Justin would be unable to complete his traditional 4 year-high school education due to his health. And then they turned to his bucket list: first up was a trip to New York, a city Justin had never visited.

But an unprecedented 17 days after Justin was listed, his parents received a call in the middle of the night: there was a match.

“We were making plans to go to New York to visit my friends from graduate school. We were booking tickets. Then we got a call from a number that I recognized immediately – from the Heart Center,” said his mother, Yang. “I was shocked. We hadn’t really gotten ready for it yet. It was such a pleasant surprise, such a lifesaving gift.”

Three months after Justin’s transplant, the family returned home to Pleasanton, CA. Justin’s recovery has been “transformational,” Yang says. “So much has changed for him. He has changed so significantly.”

In the time since, he has been swimming every day, walking on the treadmill, and is looking forward to soon being able to run for the first time in his life.

He recently asked, “What is running? How is it different from walking?” His father jokingly responded “Running is when you fly for a nanosecond when both of your feet are off the ground.” Justin responded: “Oh, so I can fly!”

Now back at Foothill High School as a sophomore, Justin is currently working on his Make-A-Wish project. For much of his life, he lacked an appetite or any interest in food due to his ailing heart, but he is now partnering with a local chef, Victoria Lacuesta, to create a transplant-friendly cookbook with heart-healthy recipes. He is also active in his school’s Pink Dot Club, an organization started by one of his classmate’s that raises awareness for organ and tissue donation.

With his second chance at life given by his new heart, Justin is eager to accomplish more of his bucket list, which includes hiking in the Grand Canyon. “He understands the possible outcome he could have had,” Yang said. “It’s been an amazing journey, physically and psychologically. And now he is working toward something to make the most of his second chance.”

This is all possible because of the donor and the donor’s family. “There is no present more precious than this life saving donation,” Yang said. “While we celebrate the new life of Justin, we are mindful of the loss of another family, and our gratitude towards them is beyond words. We tell our son ‘Justin, you carry two people’s lives; live well, and take care of the other person’s heart!”