You don’t have to read anything if you just watch this video.

I know a lot of people don’t have time to read tons and tons of journal entries, so just watch this instead. 😄 Don’t worry, it’s not cheating.

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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.

May 7, 2018

They told me if I take this sleeping medication I would fall asleep. It’s 2 AM.

I should be happy with my heart transplant. Not everyone even gets this chance. But I’m not happy.

I want to end my pain. I did not expect this pain. At all.

I can’t sleep because I’m extremely hot. So hot I’m sweating.

I’m experiencing a hot and cold sensation. My circulation is crazy because of my new heart. When I lie down, I feel like I just entered the sauna. Then the heat just keeps on increasing until it’s unbearable. When I pull my blankets off me, I get super cold. It’s like I traveled from the sauna to an 5 AM freezing outdoor swimming pool.

Sitting up isn’t an easy task. I have to squeeze a pillow around my incision area, and do a crunch. Especially being so sore, it takes a lot of effort.

Even when I do catch a break with sleep, I keep getting woken up from the machines beeping, the nurse checking blood pressure, sudden need to use the restroom, and most often the unbearable heat.

At least when the sun is up I have things to do. I can eat, watch movies, talk to my Mom. and… well that’s it. I’m in too much pain to do any homework or work on anything else. I don’t have any video games to play, and the video games in my room are broken. But at least I have something to do!

In the hospital, time is against you. An hour is a day, a day is a month, and a month is a year. If I could somehow speed up time, I would.

At night I usually just stare into the darkness and think. I’ve been having a lot of dark thoughts from all the pain. I’m not suicidal, but I just want the pain to end.

Why me? Why did I have to get this heart transplant? Why did I have to get a heart transplant in the first place?

Was a heart transplant the right choice? I don’t think it is. My new heart is way worse than my old heart. What if I stay this way forever? Then what will happen? I can’t live like this.

May 8, 2018

Today I went outside for the first time since surgery.

At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.  

It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.

I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.

I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.

A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.

I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.

May 14, 2018

Well, I’m not leaving today either. They told me yesterday that I would leave today.

I took my Chinese final today. I take Chinese class, but I have to take the final before school ends, which is in one week.

It was hard taking the final because I take prednisone, a steroid. With prednisone, my hands constantly shake. I can barely write the characters.

The staples, IVs, and PICC lines are out (see May 13, 2018), so I really liked today. I went upstairs to the playroom to play on the 3DS. The hospital has a playroom, where patients can go and… play.

May 15, 2018

I’m leaving the hospital Finally!

First, I took a shower, and the water washed off most of my dried blood.

It was nice leaving that torturous place. I went directly to the Ronald McDonald House after getting out of the hospital.

The guy at the reception desk gave me a tour of the House. There’s a community kitchen, but we have our own individual pantry and refrigerator section. There’s also a community pantry, refrigerator, and freezer. The Ronald McDonald House has several playrooms, a gym, a backyard playground, and a community dining room. The Ronald McDonald House also has a shuttle between them and the hospital.

My room was nice. It had 2 beds, and a bathroom. I can’t help but think it’s not that great for long stay housing. It’s more like a hotel room than anything.

The Ronald McDonald House was serving dinner downstairs today. This usually happens. Nonprofits usually come to the Ronald McDonald House and make dinner for families that stay here.

I ate outside. I was sitting next to a family, and I overheard their conversation. Their son was 5 years old, but had 3 heart transplants!

3??? I can barely survive this one. I left and decided to eat inside. That story made me sad.

While I was eating dinner, my heart suddenly started pounding. I instantly got mad. I’m angry with the world.

I told my Mom, “I hate this place.” I want to go home, not stay in a hotel for 3 months!

My Mom told me not to be angry. I’m lucky I got my heart in the first place. I only waited for 2 weeks, not 6 years.

I can’t be happy about this situation. I mean, this is what I’ve been working for??? To stay in a hotel room for 3 months???

May 19, 2018

I went to the hospital prom today.

The hospital prom is more of a “get together”. It’s way more PG than a High School prom.

The hospital school hosts the hospital prom. I’ve been going to the hospital school for the past month to do all my school make up work. They invited me, so might as well go.

The hospital prom was good. I can’t believe the 4 teachers from the hospital school organized this.

The outside of the cafeteria was decorated to create a jungle theme. We were given goodie bags when we entered and we used a sharpie to write our names in them. Inside the goodie bags were little toys.

There were snacks: sandwiches, chips, skewered chicken, jello, popcorn, and salad. There were also a lot of games: hoop toss, miniature basketball, the price is right, and many more. There was a DJ inside and a ukulele band inside.

They had a mini casino. There was blackjack, roulette, and poker. We had no idea how to play so we just watched.

The doctors also introduced me to another person from Pleasanton: an 8th grader who also had a heart transplant.

May 27, 2018

My Mom and I went home today.

We’re not supposed to go home. The doctors told me to always stay at the Ronald McDonald House because in case of an emergency, I need to be close to the hospital.

The thing is… I really hate the hospital and would feel way better at home. We’re not staying overnight! Only visiting. I don’t want to stay at the Ronald McDonald House, I want to stay at home. Home is where I want to be.

At home I stayed in my bed and watched TV. Now that’s comfortable. Although my hot and cold sensations might not be that comfortable (hot and cold = when I change sensations really fast).

For dinner I ate so much that my G-tube (Google it) started to hurt. If I stop using it for 6 months, I can permanently get it out.

At 10 PM, I had to leave and go back to the Ronald McDonald House. I wish I could stay at home forever.

June 5, 2018 (Sick Pt. 3)

My mom called the doctors tonight. She had to. My cold wasn’t worse than yesterday, but it still stayed the same.

Getting a cold is bad for me (see June 3, 2018 Sick Pt. 1). Especially this early out of transplant, I’m more vulnerable to infections.

I coughed all day. I also shivered, like yesterday.

The doctors called back and told us if I got more sick and didn’t get better. That’s a relief, I don’t have to back into the hospital.

July 6, 2018

I swam for the first time in seven years today!

I’ll start off with the swimming. I quit swimming when I was eight. I didn’t see the point in it since it only made me exhausted, and there were no results. I was swimming for 3 years, and I only managed to build up from 10 laps, 250 yards, to 12 laps, 300 yards. Swimming for me was exhausting. I wouldn’t even be halfway through a lap until my heart started pounding, my breathing would become desperate, my ears started ringing, and my vision would be blurry. That was my life.

It makes me sad that I couldn’t play sports like my classmates. If it wasn’t for my heart I would’ve advanced in swimming, maybe be on a team. Maybe I could’ve gotten a scholarship to college if it wasn’t for my heart. I could’ve played other sports too, like soccer or basketball.

After seven years of not swimming, I felt so much better in the water. The water soothed my joints and massaged my muscles. Immediately after transplant I was so sore that I couldn’t even stand.

I plan to start swimming as a sport. As I mentioned above, with my damaged heart I didn’t have the ability to play sports and therefore I was sad. After transplant I have a chance, and I’ll take it.