December 30, 2018

I presented my testimony to church today. Here it is:


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

Last year I was on a ride home from a doctor’s appointment with my Mom. She said “Justin, your heart is failing and you need a heart transplant.”

Let me explain: I was born normal, which is even worse. If I was born normal, then wasn’t I supposed to live a normal life?

At the age of 2, I was diagnosed with hypereosinophilic syndrome.

Hypereosinophilic syndrome is a 1 out of 50 million people blood disorder. That’s EXTREMELY rare. One divided by 50 million isn’t even a decimal! It has to be put into scientific notation!

Why would God choose me to be the one out of the 50 million people to have this extremely rare blood disorder? Why not you?

I was only 2. There was nothing I did for me to deserve this as punishment.

By age 6, I had to have heart surgery to bypass the right side of my heart. Doctors at Stanford manually rerouted my blood vessels. It was painful.

I was mad. I was very mad. Why would God do this to me?

Last year, my grandma prayed for me. She asked God “Please let Justin have a heart by his 16th birthday.”

When I first applied for the transplant list, I was denied. The second time I was accepted. However, I was the lowest priority on the list. The doctors told me that I was there “for a taste” because there was no way I’d get a heart. The last time a person as low priority as me got a heart transplant was 4 years ago.

2 weeks later I got the call. There was a heart waiting for me.

That was a miracle.

I had so much joy. I thought, “There’s no way this is happening.” But it was real.

Remember when my grandma prayed for me? For me to have a heart before I turned 16?

Just like what David said in Psalm 34:4, “I sought the Lord, and he answered me, and delivered me from all my fears.”

After surgery, I was in horrendous pain. The worst pain imaginable.

That’s when I asked back to the question, why me? Why do I have to experience this pain? Why not you? Instead of anyone of you, why was it me?

The hospital has a chapel, and I often invite the pastor from that chapel to pray for me. Prayers gave me comfort through that pain that I would be healed.

After my heart transplant, I couldn’t go back to my house. I had to stay at a nearby housing facility, which is the Ronald McDonald House, for 3 months.

My TCCBC (Tri City Chinese Baptist Church) church family visited me at that nearby housing facility. I am so thankful for their caring, support, and prayers, because I needed it.

I met so many people at that housing facility that had chronic illnesses or diseases, and most of them believed in God.

That’s because God gives them hope, and hope gets them through hard times.

In Psalm 46:1-3, the bible says “God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.”

We may never know why we go through our hardships, but we can find comfort knowing God is watching over us. Without God, I wouldn’t have had a heart.

Right now I’m doing great. It’s been 6 months since my heart transplant, and I couldn’t be better. Everyday I swim, which I couldn’t before. Make-A-Wish is also sponsoring me to make a cookbook. I’m going to publish it, and it’ll help other kids with heart defects.

What is my future? My future will be amazing. I’m going to go to University, have a great partner, and be participating in triathlons. All because of God, this is possible.


Everyone loved my testimony! The people at church applauded me. Everyone in my Sunday school also loved my testimony. They said it was inspirational.

January 3, 2019

Kayano’s kidney came today!

If you remember, Kayano was my next door neighbor at the Ronald McDonald House (see July 3, 2018 for his birthday).

This is amazing. Kayano has been at the Ronald McDonald House since May, and he really deserves his kidney.

After his transplant Kayano can finally go home and go back to a normal life. That’s awesome.

Kayano’s life today will change forever. After his kidney transplant, he’ll experience sensations he has have never experienced before, and be able to do actions he’s never done before.

Waiting is the hardest part, but they got through it.

They got through it! Woohoo!

Kayano has a great life ahead of him. I can’t wait to see what’s in store for him.

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.

February 28, 2019

I haven’t posted much lately for the entire month of February, and I’m sorry about that.

I’m going to be real honest here, I kinda forgot about this blog. I know that sounds bad, but if you think about it, it’s actually good.

It means that I don’t think of my heart transplant much anymore.

And that’s great!

At the beginning of the school year, I remember thinking about my heart all day at school. Walking through the hallways, taking notes, and eating lunch, all I thought was, “Heart transplant, heart transplant, heart transplant.”

Heart transplant used to be my life, but now it’s not.

Now that I have a life, everything’s back to “normal”. I know I can’t be completely “normal” again, but maybe I can be semi-”normal”.

March 24, 2019

I just realized something today, that I probably should’ve realized sooner: I’m going to die young.

I’m going to die at 30.

You might not know this, but a heart doesn’t last forever after transplant. The average heart after transplant lasts for 15 years.

I got my heart transplant when I was 15, and the average heart lasts for 15 years. I’m going to die at 30.

I’m not scared, which is weird. I’m not afraid, because it’s so long away.

15 years seems so longs, but 15 years also seems so short.

And it’s not fair. It’s so not fair.

An average person could eat junk food all their life, never exercise a day in their life, and never go to the hospital, and still die of old age. Me, I have to eat “nutritiously”, exercise six times a week, and go to the hospital semiannually, and die at 30.

Why do I have to suffer through pain just to stay alive?

Sure, I could get another heart transplant at 30, but I have to suffer through THAT again. And I really don’t want to. Also, let’s be real, if I had a heart transplant every 15 years, then I’d have to have 4,5 hearts to live until old age.

Lizzy, the person I met at the transplant reunion party, had her heart for 30 years. Could I be like that? Sure, but that’s only 30 years.

I would still have to have another transplant to live until age 75 (assuming my second heart also lasts 15 years). And what happens with that transplant?

Once one organ starts to fail, all your other organs start to fail. With my second heart transplant, will I need a double transplant? Will I need a kidney transplant, liver transplant, lung transplant, along with it?

And the heart transplant list is so uncertain. I was lucky to get a heart in 2 weeks (which is unheard of, by the way), but next time I’m not going to be as lucky. I could wait on the list for years.

I could die on the list.

Chronic heart failure happens so fast that it gets out of control. It’s like an exponential decay graph, and it’s out of our hands.

It makes me mad. When my classmates are settling down with their spouses, buying their first house, having kids, I won’t be there.

And I hate it.

I came here all this way to do what, do it again?

Update

I know I’ve probably scared you, or depressed you, but I’ve thought about, and I’m okay with the thought about not living until old age.

Lamenting and moping about my life isn’t going to help, and it won’t make myself better. I want to choose hope, so I will choose hope.

Medical research is growing at an exponential rate, and by the time I’m 50 there will definitely be new discoveries.

Maybe I won’t live forever, but I’ll live long enough. Fifteen years is pretty long, and who knows, maybe it’ll be longer.

Some people live more in 20 years than others do in 80. It’s not the time that matters, it’s the person.

David Tennant

The Promise Land -April 27, 2019

Hello, world! Today is exactly one year since my heart transplant.

I cannot emphasize how important today is. The one year mark is my promise land: filled with happiness, liberty, and freedom.

I want to recap with what I was doing on April 27, 2018.

During Spring Break I was at Stanford for another procedure. My mom and I were looking at online schools for my sophomore year at High School.

Since I thought 2018 was my last year at a physical High School, I decided to have some fun. That weekend I was going to attend a club convention at San Francisco.

April 27, 2018, was a Friday and I was planning to leave on Saturday. Before I went to sleep, I packed for a night at a hotel.

At 3 am my dad woke me up. He told me there was a heart waiting for me.

When I was in the hospital, it hurt so much. I cannot stress how much pain I endured.

Holding onto hope was hard. Not only was I fighting physical battles, but I was also fighting mental battles.

I looked at the one year mark as my promise land. I said to myself, “One year from now everything and everything will change.”

Let’s be real, I didn’t have anything in the present, so I looked into the future.

I didn’t expect the pain to get to where I am right now, but I got here.

Not only did I survive, but I thrived. As Mr. Lewin told me, “You not only persevere through hardship, but you exceeded beyond all expectations. You knock on the door before blowing it up.”

That’s not what he precisely said, but it’s close.

There is hope in the world. I didn’t believe it in the hospital, but I sure do now.

I know that in the future I will face tremendous challenges I can’t even fathom right now, but with love, hope, and perseverance I can persist through anything.

Yes, I can persist through anything.

Hope is mankind’s greatest weakness and greatest strength.

Anonymous

☝️ fun I had with friends to celebrate

May 11, 2019

Today I had a full night of sleep, which is awesome. When I woke up, my undershirt was pulled above my chest, and my hand was on my chest.

My scar is still sore, but not as sore as it used to be last year.

Reflecting back, exactly one year ago from today, I experienced intense pain. I doubted my heart transplant so many times, because how could life-saving treatment be so painful?

I was wrong because everything is so beautiful right now.

I am so grateful for everything right now. For sleep, food, health, and comfort.

Count your rainbows, not your thunderstorms.

Alyssa Knight

April 27, 2020 – 2 years!!

I cannot believe this. It’s been 2 years!! Happy transplanniversary (or second birthday)!

I won’t lie, it’s been hard. But the road was worth it. I’m going to reflect back on my life, and say it’s been surreal.

Every transplant recipient is a fighter. I can’t imagine how everyone else’s journey. Together, we make a community with a shared experience.

I’m also really excited for the future. I’ve been keeping up with my online classes, and I have very bright hopes for what’s coming. 🤞

I’m sorry if this is really short or if I can’t deliberate a lot, but I just want to say thank you from the bottom of my heart to the donor family, and everyone that’s supported me.

My mom and I are going to drive around (just got my permit!) and have a picnic from somewhere far away from people (still in lockdown) to celebrate.

I’m sorry about the sporadic updating of the blog and how there’s a bunch of holes and timeline missing, but I’ll get back to it and update it. Thanks for your patience! Bye 👋

January 22, 2023

Wow… I didn’t think I’d be back here. In all honesty, I never planned on going back to myhearttransplantjournal.com. I created this blog when I was 15 to make sense of the world around me. I was confused… and scared.

I wish I could say that I’m returning on better terms. Sadly, I’m not. I’ve recently had some health scares and I’m scared. I don’t know what’s going on but I hope that it’s nothing.

I want to say that I’m sorry for not updating my journal but I’m not sorry. Also, I’m like the only one who actually reads this journal lol. So I apologize to future Justin for being crass but I’m not sorry because I was out living my beautiful, wonderful life that my new heart allowed me and my heart transplant slowly and surely lightened its grasp on me. I’m not saying I didn’t prioritize my health; of course I prioritized it. But I made room in my heart (hahahaha) for me. I moved to New York, I dated (I f*cked), I did school, and I made some new mistakes, fell down, and got back up again.

However, these health challenges in these past two weeks have reawakened the fear that I’ve carried with me since I was 15. I’m scared for the worst. I don’t even want to say it because I don’t want to say it. I don’t want to speak it. But I don’t want to think about it… and it’s there.

And I don’t know if I have the strength. I know it sounds really bad, but I don’t know if I’m strong enough to go through another heart transplant again, if it came down to it. Because, what if it doesn’t work? What if I gave up my life for nothing? What if I can’t deal with the pain? What if…

I know I’m not supposed to be thinking these thoughts. I’m not supposed to speak them into my life. I have to take these thoughts and bury them deep into my mind, but I’m not able to. I was never good at burying my feelings. I literally have a blog about my feelings.

These fears can feel intoxicating. They can feel like a blanket that buries you under the covers and every time you gasp for air it pulls you down again. There’s no hope and no way out.

Because there’s no way I’m going to end with a dark note: if I know anything, I know that the sun rises every day. I have so much support, from my friends to my family. I know that I can’t do this alone and I’m so lucky I don’t have to do this alone. I will count on the love I have my friends and family to lean on in case life gets too heavy and I can’t stand on my own. I have so much and am so grateful for everything I have.