Hello friend! My name is Justin Wang, and welcome to my blog.

I know a lot of people don’t have time to read tons and tons of journal entries, so this summarizes my post-transplant recovery. Check it out if you want! 😄

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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.

April 28, 2018

Shoot me. Please.

Everything is painful. What is this in my neck, an IV? That’s painful. What is this in my hand? It’s popping out of the skin like a bulge. I… what??? Actual STAPLES inside me. I use staples to turn in my homework, not seal up a big HOLE.

I feel like I’m going to die. My heart is thudding so loud it might pop out of my chest. What is this? I can’t hear anything because my heart is pounding so loud.

Why are there tubes inside of me? There’s actually tubes inside my chest. They’re sucking excess blood from inside my chest.

I’m so uncomfortable. I’m sweating all over. Why am I so hot? I can’t move and change a position since I’m so sore, which I don’t understand? Before I went into the surgery I could at least sit up.

There’s so much plastic inside me: the chest tubes, IVs, and monitors. There’s also a lot of stuff connected to me to. There’s also bruises on my hands and arms. There’s also a big pole with tons of machines onto it. I guess that’s where all the medications are.

They want to remove my breathing tube. Did I not mention there’s a tube inside my throat? Yeah there’s a tube inside my throat. They want to remove my breathing tube while I’m conscious. And they did. They just yanked it out like tug a rope. At least I can eat and drink now.

There’s also a catheter in my urethra. So… yeah.

I’m heavily drugged, so at least I’m happy about that. I mean they’re giving me pain medication which is great (even though I still feel awful).

Was transplant right for me? Was this a mistake?

I’m so stressed. Nothing prepared me for this.

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

April 30, 2018

3rd day post transplant!

Oh I ate breakfast today! Which is great. Since my breathing tube is out, I have the ability to eat. The fact that I’m eating is telling me that my appetite is coming back.

Also, my grandma visited me today. It was nice seeing her.

The physical therapists came again today.

It’s so much pain. And so uncomfortable. There’s so much stuff inside me. These tubes… the hot and cold… the palpitations.

I don’t know how I’ll survive like this. I can’t survive like this. Even if it’s only for one week.

When will this stop?

Was transplant even right for me? This heart feels worse than my damaged heart. What if this was a mistake, and everything is screwed up for me?

I can’t help but feel so sad. Everyone in my grade is preparing for finals. I want to be preparing for finals. I want to study until 1 AM and stressed. I want to be at school. I want to be normal!

Why did I have to be the one to have this super rare disease! I can’t… why??? Why ME!

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 2, 2018

Okay, so the chair is now where I mainly sit. I don’t want to lay on bed all day because of my hot and cold sensations. If I lay on the bed, I instantly become extremely hot and start sweating.

I have physical therapy every day now. Physical therapy makes me walk a loop around the ICU 3 times a day. It’s hard because my new heart is still adjusting to my body.

My heart pounding just goes crazy when I stand up. At least I don’t hear it always. Before every hour, minute, and second it would go THUMP THUMP THUMP.

When I walk, I have to wear a mask. I can’t get any infections right now. The mask makes breathing harder than it should be.

I don’t poop out much now. The doctors said I had to poop, so they got some guy to massage my butt so I could poop. It didn’t work.

May 3, 2018

Yesterday I didn’t poop. They even had some guy massage my butt. Today they placed me on diuretics. I pooped.

My Dad also visited me today, so my Mom went home. We walked around the ICU. For physical therapy I’m supposed to walk a loop around the ICU 3 times a day.

My heart pounding goes crazy whenever I walk. The reason I’m doing physical therapy is to raise the bar for my endurance. Everyday I’m pushing my endurance levels so I can recover faster.