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.

June 24, 2018

Today there’s a Stanford run for kids. The Lucile Packard Children’s Hospital is hosting a 5k/10k run, and the money will go to the hospital.

I didn’t participate. My heart pounding is still very strong. In case you didn’t know, I have a heart pounding sensation after transplant when I do minor physical activity and my heart starts to heavily beat. I could walk as little as 100 ft and have to sit down. Also, I don’t have much endurance. After my transplant, my heart has to readjust to my body, and it hasn’t yet. I try to push my endurance often, but doing a 5k is too much.

My Mom did. She told me that she met the doctor that took care of me in the PCU (aka a doctor I can remember).

January 16, 2019

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.

March 29, 2019

Today I had another doctor’s appointment at Lucile Packard.

I woke up early today to get my blood drawn at the nearby Kaiser. Yesterday I took my medication at 9 PM so I could draw my blood at 8:30 AM.

Once my blood was drawn, my Mom drove us to Stanford. My appointment was at 10:30, so we arrived just on time.

First is echo, then the EKG, and lastly clinic (checkup) with the doctors.

During the echo, I was watching Bones. Bones is so cliche, it hurts. Why is Finn the most stereotypical southern character ever?

Shucks, I haven’t seen this much ash since my family BBQ!

(roughly quoted) (while sifting cremated remains)

Lol, okay.

Anyways, after the echo was the EKG. The EKG was very short, as always, but easy.

We updated the doctor at clinic about everything, and they said I was doing great!

Then we went to eat at the hospital cafeteria: