January 22, 2019

Today I spoke in front of the Pink Dot Club.

Well, I spoke WITH Amy McCarthy in front of the Pink Dot Club.

I insisted for us to speak in different days, because our stories take more than ten minutes. However, Maddy told me the schedule was too tightly packed for us to do our speeches on different days.

Yeah, sure. 🙄

Anyways, here it is. Maddy recorded the video.

Hi, my name is Justin Wang.

14 years ago on Christmas day I was rushed 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.

A normal eosinophil blood counts is between 1-7%. My eosinophil was 200%.

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 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.”

A year and a half ago from today, I was driving back home with my Mom when she 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.

See that image? That is the Lucile Packard Children’s Hospital. For the entire year of 2018 that became my life. And I hated it.

My life revolved around my heart failure. It’s amazing how exponentially downhill my life went.

When I ate food, I threw up. When I walked to school, I would have to endure pain every night. I couldn’t catch up in school. Last year, I was actually in Mrs. Richey’s Honor English class and I had to drop out.

It got to the point that I was picking out which online school to attend for my sophomore year of High School.

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.

Here’s how the list goes:

  • 1A – Top Priority
  • 1B – Priority
  • 2 – Lowest Priority

I was a 2.

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.

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.

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.

If you want more details about my heart transplant, just go to myhearttransplantjournal.com

It’s my blog. I detailed my heart transplant through journal entries, and published it on there.A lot of people said that they cried while watching the first video.

Other than that, that’s my story. Back to you Amy.

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