Hello friend! My name is Justin Wang, and welcome to my blog.

I know a lot of people don’t have time to read tons and tons of journal entries, so this summarizes my post-transplant recovery. Check it out if you want! 😄

How to register to become an organ donor:

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November 15, 2018

The Pink Dot Club recently announced that the UCSF Benioff Children’s Hospital is asking for videos that their patients can watch. Since the patients are in the hospital, they want something to do.

I think that I can make a big impact by creating a video. If I share my story, those patients will know that they’re not alone. If I made it through this, then they can too.

I decided yesterday that the main theme of my video will be about “stories”. Today I asked my classmates to tell their own stories. I can edit all these stories into a video compilation, and it’ll basically send a message of “This will be you” (see November 25, 2018 for the video).

November 27, 2018

Today was a Pink Dot Club meeting. We watched the videos submitted for the UCSF Benioff Children’s Hospital (see November 25, 2018 for my video). We watched ‘This is my Story #1” first. It took the entire period.

The club president still hasn’t watched “This Is My Story #2”. That video was my transplant story. It’s the most important video because it supposed to give the patient’s hope.

After the Pink Dot Club meeting, I shared “This Is My Story #1 & #2” with Mr. Lewin, my math teacher. He’s really interested with my story.


November 28, 2018

Mr. Lewin watched my videos last night. Two times, in fact. He loved it and showed it to his wife.

His wife wants to have my video. She wants to share it with other people. She’s also a teacher, so she might share it with her students too.

This is a great opportunity to get my story out there!

November 29, 2018

Yesterday I edited “This Is My Story #2” to focus more toward other people than people in the hospital. At the end I added how to be an organ donor.

I shared this video with Mr. Lewin, Mr. Lewin’s wife, and the San Ramon students. A San Ramon student email tried to access my video, so I shared it with them.

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.

January 10, 2019

Someone from my school’s yearbook team interviewed me today.

Her name is Arushi Avachat. She was, like, super professional. She’d make an awesome journalist.

My school will include me in their yearbook. Woohoo! They’ll give me two pages about my heart transplant and my blog.

I met Arushi during study hall. Study hall is pretty new to my school, and it’s kinda meh.

First she asked me questions about my condition, and what led to my heart transplant (If you also want to know visit About Me). Then she asked me questions about my blog. Who do I hope to reach, what is my message, and why I did it.

I think a question that caught me off guard was when Arushi asked me what I wanted people to know about me.

I answered that I wanted people to know that there was more to me than my heart transplant.

But is that true?

I mean, what other qualities do I have other than as someone who had a heart transplant? Other than my heart transplant, how exactly am I unique?

In the hospital before my heart transplant, I met other people and their only defining trait was their condition. I was afraid of becoming one of them, and guess what? I’m one of them.

I think that scares me. My life revolved around my heart transplant, and it still does.

I literally have a blog about it!

How do I move on?

Should I move on?

Oh! A fun fact! I didn’t write all these journal entries at their assigned date. I was WAY too uncomfortable in the hospital to write anything. However, my Mom took tons of pictures, so I just went back to the pictures to remember every thought, memory, and feeling.

It’s actually great that my blog will be in the yearbook. I really need exposure. I think the most views I got in a day so far was 8.

So yeah.

Woohoo! Yearbook!

January 15, 2019

Beth from Make-A-Wish called me today.

She announced to me that the cookbook is almost done, and that it’ll be published in April.

She told me that my video made her cry. To quote from Beth: “You hear it from the wish kids all the time, but seeing and reading about it gets to you.” She also said that this blog made her feel famous. 😂

Beth published my video onto the Make-A-Wish website. Or was it the Make-A-Wish Facebook Page? Whatever. It was Make-A-Wish something.

Beth asked me what my plans were with the cookbook. Do we host a cooking show at the Ronald McDonald House and pass out the cookbook to everyone there? Do we sell the cookbooks online and donate the proceeds to charity?

I said hosting a cooking show sounds pretty cool.

Beth asked me about how we’re going to do the cooking show. Who cooks? I’m going to talk, but am I going to talk and cook simultaneously?

I said that My Mom and Beth could cook, and I could talk while they’re cooking.

Beth also asked me what other organizations I wanted to partner with. I told her Donate Life. If you read my How To Be An Organ Donor Page, you’ll see that I reference Donate Life as where to register as an organ donor.

Donate Life is the biggest organ donation network in America. Well, next to UNOS (United Network for Organ Sharing).

Beth told me that was a LITTLE too big. But, I mean, Make-A-Wish is pretty big too, right?

I told her partnering with The Pink Dot Club would also be pretty cool. The Pink Dot Club is affiliated with Donate Life.

Beth told me that she would contact the Ronald McDonald House, and I could work on contacting Donate Life.

A last thing: Beth organized a cooking show for us at the Macy’s on Union Square San Francisco in April of the day of national wish day. Sounds cool!