Today I had pain in both of my legs. I don’t know what triggered it, but I hadn’t felt leg pain in a long time. I took Tylenol to calm down the pain.
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 2, 2019
Today I took my medication at 1PM. I was supposed to take it at 8:45 AM.
My alarm clock must’ve not gone off. But I checked my iPhone and the alarm was still set for 8:45 AM every day!
I already missed two doses: one today and one December 24, 2018. My body is very sensitive to the immunosuppressants, so I really hope that nothing drastic happened with those missed doses.
In psychology, I watched a video about how teenagers purposely missed multiple doses, and they all died. I’m not going to die, but I don’t want my heart to be damaged.
January 3, 2019
I had leg pain today.
I don’t know what triggered it, but I had leg pain, again, today.
I followed my usual routine for when I have leg pain: take 2 Tylenol, and the pain goes away.
I wonder, is it possible to develop an immunity towards Tylenol? I know bacteria can develop immunities towards antibiotics, so can my pain get so used to Tylenol that it won’t affect me anymore?
I wonder…
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
Kayano didn’t get his kidney transplant.
The doctors looked at the kidney and said that the kidney wasn’t any good.
Kayano must feel horrible.
I mean, what a great way to crush all hopes and dreams!
God, this is so sad. What a big oof.
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 4, 2019
I had another swim lesson today.
January 5, 2019
I took the appetite pill for the first time today.
When I visited the G-tune doctor on December 12, 2019, he said that I needed to gain 10 pounds by March.
He prescribed me appetite pills, but I never took them.
Why?
I feel that I can gain weight without having to take medication. I mean, anything is possible, right?
Well my Mom obviously thinks I can’t, so I took my appetite pills today.
January 7, 2019
I had a swim lesson today. 👍
