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Justin Wang is a sixteen-year-old High School student and heart transplant recipient. At age two, he was rushed to the local Kaiser Permanente hospital with a swollen face and lasting fever. He was transferred to UCSF Benioff Children’s Hospital’s Intensive Care Unit, and it took the doctors nearly a month to diagnose him with hypereosinophilic syndrome.
Hypereosinophilic syndrome (also called Loeffler’s syndrome), is an extremely rare blood disorder categorized with an excess of eosinophils, a specific white blood cell. The doctors eventually controlled his hypereosinophilic syndrome with the then newly developed wonder chemotherapy drug, Gleevec. Despite that, his organs were damaged by the time his hypereosinophilic syndrome was controlled. The right ventricle of Justin’s heart was attacked by his excessive eosinophils and was severely damaged with scar tissue.
When he was six-years-old, Justin underwent his first open heart surgery at Lucile Packard Children’s Hospital at Stanford by cardiothoracic surgeon Frank Hanley, MD. A Glenn procedure was carried out to remove scar tissue from his right ventricle, and to reroute blood flow to his lungs to help relieve stress on his heart. Justin’s parents were told that when he becomes a teenager, additional surgery would likely be required, and most likely, he would eventually need a heart transplant. His mom, Yang Wei, knew about this and decided “a life in ignorance is better than a life in fear.” In other words, she never told Justin anything.
But in late 2017 at age fifteen, his health began declining rapidly, including heart arrhythmia, extreme fatigue, and loss of appetite. His mom gave in, and on a car ride home, she told him about his life-long journey of struggle. Following four stays in the ICU, Justin’s care team at Lucile Packard determined he would need a heart transplant to survive and listed him as a Status 2 on the heart transplant waiting list on April 10, 2018. Status 2 means he was deemed healthy enough on oral medications to remain at home while waiting. Doctors told them it was common to wait months or years for a donor match. It has been four years since a Status 2 patient received a heart at Lucile Packard. He was merely on the list for a “taste of being on the list.”
Only seventeen days after Justin was listed, his parents received a call in the middle of the night: there was a match. Justin had his heart transplant on April 27, 2018. At first, Justin experienced immense pain, but through hard work and physical therapy, he was discharged from the hospital nineteen days after the surgery. Following Lucile Packard’s well-designed post organ transplant protocol, Justin stayed at a housing facility near the hospital, the Ronald McDonald House, for three months. There he befriended many fellow patients. Two weeks before his High School restarted, Justin was discharged from the Ronald McDonald House and returned home (July 25, 2018).
During his stay in the Ronald McDonald House, Justin learned that many kids are suffering from heart failure. Justin wished to advocate for the lifesaving procedure. Justin decided to start a blog and publish his story online. My Heart Transplant Journal detailed his heart transplant from day one to the present. You can find it at: myhearttransplantjournal.com
For much of his life, Justin lacked an appetite due to his weak heart. For many years, he has had a g-tube in his stomach to feed him nutrition in his sleep while he can only eat a little orally during the day. Although Justin didn’t eat much orally, he still desired the taste of delicious food. He loved the sensations of flavor, and also enjoyed the culinary process of making meals. This desire was fueled by his old tutor teaching him after school every day how to cook tasty meals. Since he was a child, he found great joy playing Cooking Mama on Nintendo DS or making homemade noodles.
With his new heart, he has gained a tremendous appetite. With this new aspect of life, he has made a wish through Make-A-Wish Greater Bay Area to create a transplant-friendly heart-healthy cookbook. Determined to nourish his new heart, he made eating healthy a priority. Introduced by Elizabeth “Beth” Nolan, Director of Make-A-Wish Greater Bay Area, he collaborated with a local chef, Victoria Lacuesta, to create a transplant-friendly cookbook with heart-healthy recipes.