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 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.

May 5, 2018

A PICC Line was installed today.

A PICC Line is like a more permanent IV. They put it inside of me the same way they put in an IV: with a needle. However, my Mom and I had to wear caps and masks while they did it. The extra protection has something to do with preventing infection.

They took out the IV in my neck. Or was it a blood pressure monitor? Either way I’m glad it’s out. It’s not the most comfortable thing in the world.

They also replaced the gauze and tape covering my chest tube holes. It’s closing nicely.

A big thing: I transferred from ICU (Intensive Care Unit) to PCU (Patient Care Unit) today. The ICU is mainly where you stay if you’re in critical condition and need constant monitoring. The PCU is where you stay if you’re in better condition and have more privacy.

For me, the PCU is my transition phase between surgery and discharge from the hospital. I can’t wait to be discharged from the hospital (see May 15, 2018). Even though I won’t be going home immediately after, I still can’t wait to get discharged.

May 12, 2018

I hate the night.

The night is horrible. I can’t sleep so I just stay up and stare into the wall.

Before I went to slept I talked to a nurse. She told me that it was normal for me to be sad. She took care of other heart transplant people and said they were sad after transplant too.

She told me all the sensations were normal. The heart pounding, hot and cold, and inability to sleep was normal.  For the heart pounding my heart was adjusting to my new body. For my hot and cold sensations, my circulation is going crazy because my heart’s pumping abnormally.

Then why would the doctors not tell me about this in the transplant education? Last year, before I was put on the transplant list, I was educated about everything of transplant by a doctor. Yet they never said anything about heart pounding or hot and cold sensations.

I expected pain. I expected a giant cut down my chest. I expected being in the hospital for a long time. I did not expect my heart and pounding. I did not expect my hot and cold sensations. I did not expect an emotional rollercoaster.

The nurse told me about an orphan baby. An orphan had a heart transplant at this hospital. Since he had no parents to take care of him, she would cradle him in her breaks.

I can’t imagine being here without my Mom. Some children’s parents don’t stay with them at the hospital. What kind of parents do that? I couldn’t imagine choosing work over my child in the hospital.

Now I know that my sensations are normal. Then when does it start to go away?

Does the knowledge that my sensations are normal help me? Yes. I’ve been questioning whether transplant was right for me, so at least I know I’m not dying.

May 13, 2018

They told me I would leave the hospital today or tomorrow!

Finally! Staying in the hospital is horrible.

However, I wouldn’t leave to go home (which suacks). I would leave to the Ronald McDonald House. Yes, Ronald McDonald. Ronald McDonald of McDonald’s, the fast food chain.

McDonald’s has a charity that sets up housing near hospitals for families with their children in critical care. Hence, the Ronald McDonald House. There’s tons of them around the United States.

I am so glad I’m leaving. Every since day one of transplant, I’ve been dreaming of getting out of here. Pain is really, truly, honestly horrible. Is leaving the hospital going to get rid of my pain? Hopefully!

Today is also Mother’s Day. I’m gonna say my heart transplant was the biggest present for my Mom. When I was put on the transplant list, she had so much anxiety. She started taking pills. Thank God I was only on the list for 2 weeks!

Oky, so I’m not leaving today. I’ll leave tomorrow. That’s fine.

The doctor came in to talk to me about my staples. During rounds, I mentioned that before I left the hospital I want my staples taken out.

The doctor told me I would either have to wait until the next biopsy to take out my staples, or take them out now when I’m conscious.

I choose to take them out now.

They took a stapler remover, and used it on a human person. I’ll repeat, they used a STAPLER REMOVER. The staple removers you use to get out the staples in your homework packet, and used it on human flesh.

It was… painful.

What was surprising was no blood came out. The nurse gave me a hot pack to put over my chest.

Even though it was painful, I’m glad they took the staples out. I had a lot of anxiety over the staples because I was afraid that they would just pop out and my chest would just open.

Later in the day the nurses also took out my PICC line (see May 5, 2018). I think a PICC line is like an IV, but larger. Removing the tape made me really anxious, but it didn’t hurt to take out the PICC line. I hate my imagination.

The PICC line was at least a foot long! That was in me? That was in my veins? Oof.

Now all I have is my heart monitor. I ain’t got no tubes, poles, or even IVs. That’s awesome.

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.

June 22, 2018

My Mom and I walked to the Stanford theater today. The Stanford theater is a theater in Downtown Palo Alto that plays classic movies. Downtown Palo Alto isn’t far from the Ronald McDonald House.

Even though Downtown Palo Alto isn’t far from the Ronald McDonald House, it’s still a tiring walk for me. I have a sensation of heart pounding when I do any physical activity. Although it’s not as bad as it was in the hospital, it still inhibits me from doing a lot. I wore my pixar hat I got from the Ronald McDonald House (see June 21, 2018) to protect myself from the sun. After transplant, I’m also more vulnerable to skin cancer.

The Stanford theater has showtimes on their ticket booth and online. If you’re staying at the Ronald McDonald House at Stanford, I recommend you check them out. We watched the Royal Wedding at 7:30 PM. The Royal Wedding was released in 1951, so it’s pretty old.

June 26, 2018

Today I watched the World Cup game Nigeria vs. Argentina. Argentina won. If I have to guess, I bet Argentina will win the 2018 World Cup.

Update: Lol, nevermind. France won.

I followed my strict regimen I developed:

  • 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

Following my regimen is important. It guarantees that once I get out of the Ronald McDonald house I’ll be able to have the capacity for normal activities (such as walking around school), it builds a basis for any sports I’ll want to play, and I can focus on eating enough food everyday.

A Make-A-Wish representative visited me today. Make-A-Wish is a non profit that provides “wishes” to children with critical illnesses. She asked me what I wanted for my wish. I don’t know.

I thought about putting solar panels on the roof of my house, but my Mom said that would be a waste of a wish. Then, on the spot, I got it! I would meet up with a chef to create multiple simple, healthy recipes I can eat. Throughout my life, I’ve had no appetite. I don’t eat enough everyday, so through my gastral tube I insert half of my calories. After transplant, I have an appetite so now I eat enough calories everyday. If I made recipes with a chef, it would help me eat normally.

The representative and my mom thought that’d be a great idea. They even said that I could format those recipes into a cookbook, and share it with other patients that have chronic illnesses. I’m really excited about this.

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.