April 27, 2018

Today at 3 AM my parents woke me up and unplugged the feeding tube from my G-Tube. I thought “Oh God. Another surgery? I’ll go back to sleep for a few more minutes.” I could hear my dad saying “Yes, yes, thank you. Where do we go? Okay.” My Mom then shook me again. She said “Justin, they have a heart ready for you.” At that moment I jumped out of bed. My heart was here? After 2 weeks? Not 6 years? It was unbelievable!

My Mom didn’t pack much stuff. Inside her bag was her clothes, a phone charger, and Kardia. All I packed was my stuffed teddy bear, Beary. When I got inside my mom’s car, I felt something amazing. Similar to the feeling a mom has before giving birth, I knew that after today my life is going to change. Forever.

My dad followed in his car behind my mom’s car. Lights blurred as they merged on the highway’s scenery. There weren’t many cars on the highway, but I tried to guess the ones that were there why they were driving at 3 AM. The ride was silent since my Mom didn’t say anything. I asked her, “Are you nervous?” She replied, “Yes. Are you?” I said, “Yeah, but mostly excited.” At this point I texted my friends. There were only 3 friends I trusted with my health condition. All of them helped me with my homework when I was gone, listened to me rant about my declining heart disease, and overall pretty good people to hang out with. Each one I texted 2-3 sentences about my transplant and how much I appreciated them.

The hospital seemed majestic that night. When we arrived, the sign that said Lucile Packard Children’s Hospital seemed to glimmer under the moon. I made sure to enjoy the air outside because I knew that I couldn’t breathe it for a while. Inside the garage, I suddenly realized that I should take pictures, so I took pictures of the garage. After meeting up with my Dad, we took the elevator upstairs.

On the ground floor, the receptionist told us that we needed to go to the Treatment Center where most surgeries were performed. However, the Treatment Center was closed. While my Dad tried to call the number that contacted us at 3 AM, I decided to look at the miniature statues of rabbits and turtles on the floor. In my mind, I was thinking, “Is this really happening? What’s going to happen afterwards?” I never thought, “Will I survive?” I knew I was going to survive. I never had any doubt.

We decided to go directly to the PCU (Patient Care Unit). The nurse at the front immediately asked “Are you Justin Wang?” After confirming it was me, she had me take a shower. She explained it was because I wouldn’t be showering for a long time after the surgery. The shower was warm, not too hot or cold. I immediately put on my gown and my dad took a picture of my with a thumbs up. For me, the hardest part of that day was when the nurse put the IV in me. That’s it.

An hour later, they transferred me to the surgery center. At the surgery center was a list of patients and their surgery. There on the top of the list was me: JUSTIN WANG – HEART TRANSPLANT. I was proud of myself, I was going to do something amazing.

At 6 AM came the anesthesiologists. They told me the one IV I had in me was enough. Once I was unconscious they would place multiple IVs and tubes inside of me. They also told me the doctor was preparing for the surgery. I remembered from my transplant education that “the hardest part of the operation is not replacing the heart, but cutting the individual veins.” 7AM was my scheduled surgery time.

Around the same time my sister called me. She was crying because she was so happy for me. I know that since I was in the hospital, my heart failure has impacted her life in a negative way. Even through this she was a good sister, and I really appreciate that.

My friend, Ray, also called me at the same time. He said “I’m so happy for you man. I totally want to visit you after you’re done.” When I heard him say that, I was overjoyed. Ray has been a big supporter in my life. Although he was busy being a genius, he always made time for me and my health. We were in two classes together, both volunteered together, and even spent a weekend in a tiny hotel room in Santa Clara together.

Around 7:30 they told me it was time. They injected some “happy juice” through my IV, and I instantly started laughing. I always liked the “happy juice” because it made me feel happy. I said goodbye to my mom and dad, and they in turn kissed my cheek.

The last thing I thought about was my mom. She’s my biggest supporter in life. She’s my caretaker, best friend, and supporter. Compared to other moms, she’s supermom. When I suggested online school for the next school year, she showed me 3 pamphlets for online school the next day, When I said I didn’t want to go to school, she whipped out her phone and dialed the school’s office. When I was in the hospital, she never left me and always held my hand.

My Mom is probably the biggest sufferer from my medical condition. When I was in the hospital for my first open heart surgery, her dad also died. While my grandfather was being lowered into the ground, I was under the knife. My Mom is so glad that I got a heart transplant. Ever since I was on the list, she started taking anxiety pills.

The operating room doors were the white swinging doors at any standard hospital. When they wheeled me inside the operating room, I remember there being a bright light. The bright light is the end of my memory.

April 29, 2018

I sat down for the first time today.

I’ve been in bed all day yesterday. Physical therapy wants me to be as active as possible. They held the tubes and lines so I could walk without anything in my way.

I was sweating so much that I’m glad to be off the bed. What I didn’t expect was how sore I was. I swear, I had the flexibility as the tin man.

My heart is horrible. My heart suffered at this tiny shred of exercise. When I was helped up, my heart was all THUD, THUD, THUD. It did not like this.

It was so painful getting up. My heart and soreness combined with my anxiety of tripping over the wires and having all the IVs pulled out of me was awful. Once I was on the chair, I was okay.

Turns out I sweat a lot on the chair too! As soon as I sat down, I immediately felt hot.

Well, at least I’m progressing fast. I got my breathing tube removed and I had my first physical therapy session today.

Skip to 00:15 to see the tube removed

May 1, 2018

I pooped today. Which is great! I also sat in my room’s chair.

I’m not allowed to shower, so my hygiene isn’t that great. The nurse washed my hair with dry shampoo and water. Then the nurse wiped me down with sanitary wipes.

My chest tubes were removed today. The nurses first removed the tape, which they said was “the most annoying part since there’s a lot of them.” Removing the tape doesn’t hurt, but it does create anticipation. After the tape was removed, they yanked the tubes out. It shouldn’t be done slowly, because that creates way more pain.

They covered the holes with some gauze pads and tape.

May 4, 2018

I have so much pain. The doctors lied to me. They said that I would have tons of energy after transplant. That’s a lie. I feel horrible. There’s pain everyday. There’s pain always.

Is my heart okay? Was a transplant right for me? This heart works worse than my damaged heart. What if all this pain was for nothing?

This heart is always pounding. Every second I’m awake I can feel and hear it. It’s always THUD, THUD, THUD.

I have anxiety because of the heart transplant. I have never had anxiety as bad as this before transplant. What if this heart stops pounding? My staples feel like they’re going to pop and my chest is going to open up.

I HATE THIS POLE. Why is there such a big pole next to me! There’s tons of cords coming from my body. I always get myself tangled. There’s more plastic in me than the Pacific Ocean.

Why the hot and cold sensations? One moment I’m hot, the next moment I’m cold. I can’t sleep because of this (and also the pain). I lie down and in minutes I start sweating. I sit up and I’m instantly freezing.

Physical therapy is the worst. They want me to walk around the unit three times a day. I can barely sit, not even walk. When I walk I have to constantly take breaks. I also have to concentrate to not trip and fall over my lines connected to my IVs, which sucks.

I try to distract myself from the horribleness of this situation by watching TV. Nothing can distract myself from the pain. It’s always nagging and tugging at me. Like, why?

I’m so sad. I can’t explain how sad I am. Everything seems hopeless. This heart transplant was supposed to be my treatment, but it’s not working. All it’s brought was pain.

November 15, 2018

My Mom decided to pull me out of school after study hall. The air pollution is so bad from the fire nearby. I signed out by the health office, and I met the school nurse. I told her I had a heart transplant, and she instantly knew that I was Justin.

She recommended me to not come to school tomorrow. She’s not the only one; all of my classmates also told me to stay home.

I’m considering it. I miss school constantly for doctor appointments, and I know when you miss one day of school, you do twice the work of that day. That’s why I’m hesitant to skip school.

It was nice meeting the school nurse.

December 6, 2018

I’ve been sneezing and blowing my nose all day.

I’m scared that I’m sick. I don’t want to be sick.

I don’t want my heart to be rejected by my body. Or my heart to have an infection.

Okay, so if I’m sick, is it really that bad? There’s a very little chance of that happening.

There’s still a chance though.

Idk maybe I’m just too worried.

I do everything to protect myself from being sick. In school when someone even coughs I instantly switch seats to the back of the classroom. I never participate in activities outside because I don’t want to get cold or muddy.

Oh wait… yes I do! Yes I do!

Everyday I swim at night.

Everyday I swim at night!

The one thing that’s supposed to be shielding my heart from infections, is giving my heart infections?

It’s also December. Ever since late November it’s been more and more cold.

Well, I have a doctors appointment tomorrow at Stanford.

Should I tell them about this? Is it even important?

They have dying children to take care of. Should I tell them I think I might be sick?

December 16, 2018

When I went to go swimming today, I saw my classmate in the locker room.

He’s better than me in every way: better grades, better friends, and better looks.

He was also changing into a swimsuit.

I didn’t want to swim with him in the pool.

Guess what I did.

I left.

I left the locker room and didn’t go swimming.

I don’t want to show off how terrible I am compared to him.

What the point of this journal entry?

Idk.

I guess I don’t have a point.

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 17, 2019

I didn’t go to school today. Since yesterday was my biopsy day, I decided to take a day off to heal.

Usually I don’t miss school. Even after biopsies, I go to school the day after. One time I went to school the day after a biopsy, and my incision site started to bleed while I was taking a Chemistry test. I didn’t say anything about the bleeding because I really wanted to finish the Chemistry test.

Another example is last year. Last year when I was in the hospital for leg pain, I begged my doctors to let me go back to school after one month. Instead, they made me be homeschooled for two months.

The reason I hate missing school isn’t because I have a great time at school or all my friends are there, it’s because when I miss school it stresses me out. I not only have to make up homework, but also schoolwork. That’s double, sometimes triple, the amount I have to do.

So why did I choose to stay at home today?

I guess I choose to stay at home today because I just felt like it. 🤷‍♂️