July 2, 2018

One of the benefits of staying at the Ronald McDonald House is you get to know a lot of people. Of course you don’t want to be at the hospital, but if you’re a patient staying at the Ronald McDonald House instead of the hospital then you can have fun. My most popular way to meet people is just sit in the community dining room and read. People will automatically come up to you if you look open.

People are surprised to know I’m the patient. They said I look so healthy, since I’m not in a wheelchair, have IV tubes sticking out, or extremely skinny. Someone even said they thought the patient was my grandma, and not me. That’s so good!

The people you meet and their stories are amazing. They’re inspirational but sad. A 10 year old girl has 10 open heart surgeries. A 14 year old girl with leukemia and went through different types of painful chemotherapy. A guy with a stem cell transplant that needs to stay at the Ronald McDonald House for 6 months (twice my required stay for heart transplant). A 10 month old girl with heart and brain damages. These are just a few.

When I was reading my book at the community dining room, I talked to Joe and another person at the same time. Joe is the dad of Nicole (see September 20, 2018), a girl who shortly came into the hospital after I left. This is Nicole’s 5th open heart surgery to replace her right artery. Her right artery was replaced with a mechanical one, and as she grows up her heart grows too, so the artery needs to be replaced. When she didn’t wake up, that was the sign that things were wrong.

I also talked to a nanny of a patient. That patient has been at Stanford last year for leukemia, and for the Fourth of July she was wheeled onto the Lucile Packard Children’s Hospital roof; from there she watched the fireworks. She’s been through many painful treatments, and now they’re trying a bone marrow transplant. Before she gets a bone marrow transplant, she needs to go through conditioning. Conditioning was supposed to be finished in November, but it’s now July. The nanny shaved off all her hair to support the patient.

The nanny also has health conditions. She has multiple strokes, so she needs to go through painful treatments to control them. When she went to a doctor in San Francisco, she had to bend over and they inserted a needle into her spine to place an IV. It wasn’t done well, so she had to bend over two times.

It’s a sad world inside the hospital.When you’re around so many sick people, you also become sad.

July 4, 2018

Today is the Fourth of July. Since I’m staying at the Ronald McDonald House, and not at my house in Pleasanton, we don’t really know what to do. I searched the internet, and I found that there’s a fireworks show at Seaport Boulevard in Redwood City.

Redwood City is nearby Palo Alto, the home of Stanford University. Seaport Boulevard is a boulevard that’s near the water, and there’s a private yacht dock along the boulevard.

My Mom drove me to Seaport Boulevard, but then she saw how wheelchair accessible the boulevard was, so she drove back to the Ronald McDonald House to get our grandma. Our grandma also needs special care, so she stays with us at the Ronald McDonald House.

We got takeout food in Downtown Palo Alto from Jing-Jing Szechwan & Hunan Gourmet. I first tasted Jing-Jing in the hospital after transplant. I didn’t have much of an appetite, but I wanted some noodles, so a nurse suggested Jing-Jing since they had great noodles. The hospital food was great, but after awhile it gets boring.

After we got takeout, we went to Seaport Boulevard with grandma. By the time we got there, the fireworks already started and all the cars were jammed. We decided to park outside, and watch the fireworks from the sidewalk. It was a great day.

July 22, 2018

My mom’s friend visited me at the Ronald McDonald house today. She’s a principal at a preschool. We walked across the street to a cafe at the Stanford mall. I got to eat my salad filling my daily requirement.

Here’s my daily checklist:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

Today is my grandma’s birthday. I’m also leaving the Ronald McDonald house in a couple of days so we’re celebrating today as a going away/birthday party.

Kayano, Koda, his mom, and his grandma came to celebrate. Kayano is my next door neighbor being treated on dialysis, eventually leading up to his kidney transplant. Emma’s (pseudonym) family also came. Emma is my 16 year old friend at the Ronald McDonald House. We brought out a cake and served it to everyone except Kayano, who doesn’t eat.

October 20, 2018

Today is my 16th birthday! My friend, Lydia, and I went to the Oakland Zoo to celebrate my birthday.

I specifically asked Lydia to celebrate my 16th birthday with me because I needed to tell her about my heart transplant. Lydia and I have been friends since 3rd grade, but we don’t go to the same school, so she really didn’t know what was going on.

She was pretty shocked. I guess it’s kinda weird for her to talk about it, since it is a heavy topic.

Last year October my grandma prayed for me. I remember she cried when my heart was failing. She believed that transplant would be my cure. She asked God “Please heal Justin before his 16th birthday.” After my 15th birthday I was evaluated for the transplant list. My grandma kept asking me whether or not the doctors accepted me onto the transplant list. A month later they called my Mom and told her I was denied.

Today is my 16th birthday. I’m grateful for my new heart.

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.

August 4, 2020 – Remembering Grandma

My wonderful and amazing grandma passed away on August 4, 2020.

I will always remember her resilience, cheerfulness, and wisdom. She radiated love and kindness, virtue and integrity, and intelligence and perceptiveness. I was blessed to have her as my grandmother.

Growing up in a small village in China, grandma was the first girl in her family to be sent to school. She begged her family to study in the local school, where she was taught art, science, and literature. Her younger sisters followed in her footsteps and were also educated. In college, she studied education, with the hopes of becoming a teacher. During her early 40s, she became extremely ill, but fought her disease with the same resolution she carried throughout her life. After my mom came to the United States, my grandma followed and we became a beaming family.

Even though in Chinese grandma is 奶奶 (nǎi nai), our family always called her 婆婆 (pó po), per her local dialect. I remember taking Chinese classes so I could communicate with 婆婆 better. I also became Baptized before her death, to give her reassurance.

It was my privilege to become close with her. I have learned how to fight, learn, and persevere with her wisdom. She has lived an astonishing 90 years, despite doctors predicting she couldn’t survive 50. Grandma also helped me through my heart transplant recovery. The night before she passed, I held her hand; when I squeezed she squeezed back, acknowledging me. I think this is the reason she didn’t pass during the night.

As much as I loved her, I recognize the need for her to depart this life. She belonged in Heaven with grandpa and loved ones. We are all children of God, and I trust she is watching down on us. May her life be remembered and cherished.