January 4, 2019

Every year the Rotary club has an annual youth speech. The rotary club is an organization with a goal to promote public speaking.

I decided to speak at the youth contest this year. This year’s theme was “Be The Inspiration”.

I won 3rd place. Sad, but it’s okay.

Here is my speech:

Hi, my name is Justin Wang and I’m 16 years old.

Exactly a year ago from today, I was in the hospital. There was a searing pain in both of my legs, and it wasn’t leaving.

A year and a quarter ago from today, I was in the hospital. The doctors caught something called arrhythmia in my heart, and it was a sign of chronic heart failure.

A year and a half ago from today, I was in the hospital. My Mom was driving me back home after being in the hospital, and she said “Justin, you have chronic heart failure, and you need a heart transplant.”

14 years ago, I was in the hospital. I was pale, nauseous, and throwing up. It took the doctors a month to diagnose me with hypereosinophilic syndrome.

What is hypereosinophilic syndrome? Hypereosinophilic syndrome is a super rare blood disorder.

Eosinophils are a type of white blood cell, and white blood cells are your immune system. Your immune system attacks any foreign substances.

There’s almost no literature about it, and according to the center of Genetic and Rare Diseases, ¾ of cases with hypereosinophilic syndrome still have unknown causes.

I have no idea why I had it. I was born normal, so wasn’t I supposed to be normal?

I was being treated at UCSF Benioff Children’s Hospital, one of the top pediatric hospitals in the nation, and they had no idea what to do. Again, that’s how rare it was.

They finally found out how to treat hypereosinophilic syndrome with Gleevec, a chemotherapy drug.

However, by the time my hypereosinophilic syndrome was cured my heart was damaged.

An immune system attacks. With so much of an immune system, they needed to attack something. So they attacked my heart.

The entire right side of my heart was damaged. I was transferred from UCSF to Stanford’s pediatric hospital. At Stanford, they bypassed the right side of my heart through a GLENN procedure. In other words, they manually rerouted the veins that were going to the right side of my heart to instead go directly to my lungs.

It was a successful procedure! But there was one catch: the surgery would wear off during my teenage years.

My Mom knew this, but she never told me about anything. Not about my hypereosinophilic syndrome, not about my chemotherapy drug, and not about my heart surgery.

She said, “It’s better to live in ignorance than in fear.”

Let’s go back to a year and a half ago from today, when my Mom said, “Justin, you have chronic heart failure, and you need a heart transplant.”

That’s when she explained everything to me: about my hypereosinophilic syndrome, my chemotherapy drug, and my heart surgery.

I have to agree with my Mom. It is better to live in ignorance than in fear.

When I first applied for the heart transplant list, I was denied. That was soul crushing.

The second time I applied for the heart transplant list, I was accepted. As their lowest priority.

I mean, it made sense. A heart goes to the person that most needs it. And I wasn’t exactly dying.

But the doctors told me I was on the list for “a taste” of being on the list. There was no way I’d get a heart, because the last time someone as low priority as me got a heart was 4 years ago.

2 weeks later I got a heart.

I think that, in itself, is inspirational. But I’m not done!

After my heart transplant, I was in pain. I mean, like, a whole lotta pain.

But it was okay. I worked and worked on physical therapy everyday, and I got out of the hospital in 2 ½ weeks.

And I still couldn’t go home! I had to stay at a nearby housing facility for 3 months. The doctors said that in case of an emergency, I had to be near the hospital.

Do you wanna know what that housing facility is called?

The Ronald McDonald House. I know, haha, so funny, Ronald McDonald.

McDonalds has a charity where they make housing facilities near hospitals. Ronald McDonald Houses are set up, and families can stay there while their children are being treated.

At the Ronald McDonald House, I met so many people. There were people with heart surgery, brain surgery, lung transplants, kidney transplants, and bone marrow transplants.

You might think that’s kinda sad, but I think that’s kinda inspirational. Everyone there went through so much, and they still lived their life like they wanted to.

The doctors told me that there was a 75% of me getting some form of rejection within the first 3 months post transplant. I am happy to report, that after 8 months post transplant, I have had 0% rejection.

What am I doing now?

My life is amazing right now.

Make-A-Wish is sponsoring me to make a cookbook. Specifically, a heart healthy cookbook. We’re going publish it, and it’ll help other kids with heart defects.

Also, I’m doing a blog. On my blog, I publish all my journal entries about my heart transplant. It’s called myhearttransplantjournal.com.

I hope my blog will be beneficial to everyone. For those in the hospital, I hope it’ll give them hope. For those living a normal day to day life, I hope it’ll inspire you to become organ donors.

What is my future?

My future will be amazing. I will go to University, have a great partner, and be running triathlons, with the same heart I have now.

Thank you.