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 26, 2018

My Dad visited me for the first time at the Ronald McDonald House today. The Ronald McDonald house is a housing facility near the Lucile Packard Children’s Hospital. I have to stay here 3 months before I can go back home. Unfortunately, I can’t spend the day with him because Ray is visiting me today.

Ray is coming here today. I know this isn’t easy for him because Palo Alto is 40 minutes away from Pleasanton and this week at school is finals week.

Ray is great friend. He’s supported me when I missed tons of school. I texted him the day of my heart transplant (April 27, 2018). He wanted to visit me in the hospital, but I told him no because I was feeling awful (May 4, 2018). Now that I’m out of the hospital I’m better.

There’s a mall across the Ronald McDonald House. Today is my first day exploring that The Stanford Mall. The Stanford Mall is also an outdoor mall so I have to be careful and stay in the shade. After transplant, I’m more vulnerable to skin cancer.

Palo Alto is a rich city. Actually, any city in Silicon Valley is a rich city. I expect everything at the Stanford Mall to be super expensive considering: it’s in Palo Alto & it’s in Stanford. Turns out all of the prices were the same as my own hometown, Pleasanton.

My FitBit told me I walked 10,000 steps today. Woah.

In the hospital I could barely walk 10 feet without taking a break. The reason is my heart goes crazy whenever take a step. While walking and talking with Ray, I must’ve ignored my heart. That’s awesome!

I’m not even a month after my heart transplant, and I walked 10,000 steps!

When Ray left, my Dad and I went to Downtown Palo Alto to eat.

This is also my first time exploring Downtown Palo Alto. Downtown Palo Alto is a lot nicer than Downtown Pleasanton.

At Downtown Palo Alto I ate dinner with dad at ramen restaurant. Sushi used to be my favorite food, but I’m not allowed to eat raw food. Forever.

After eating, my heart pounding decided to show up. For a good 40 minutes after eating my heart was beating out of my chest. I didn’t want to stand up or walk. I hate my heart pounding.

June 16, 2018

My Mom’s friend, Joanna, visited me at the Ronald McDonald House today. Joanna was my piano teacher, and I’m friends with her son, Andrew. We went to eat at Calafia Cafe & Market A Go-Go. We went there because I saw that restaurant on a TV show called Diners, Drive-Ins, and Dives.

Update: Calafia Cafe & Market A Go-Go is permanently closed.

When Joanna and Andrew left, I made mushroom cups with Angela. We followed a recipe online. Angela is my friend at the Ronald McDonald House (see June 15, 2018 for her condition). I already made the filling for the mushroom cups yesterday, so I brought it out from our community refrigerator. I put the premade filling into the filo cups and baked it in the oven.

Angela’s family had a BBQ today. I joined in their barbeque and they liked my mushroom cups. I met Angela’s sister and her English teacher. I had a great time with them!

After the barbecue my Dad visited me at the Ronald McDonald House. Dad brought Julia, my sister, too. This is the first time after transplant that I’ve seen Julia. The reason is because UCLA doesn’t start summer break until June 10.

We went across the street to the Stanford Mall to eat dinner. We ate at Tender Greens, a restaurant that serves salad. I couldn’t eat so much since I had to walk to the Stanford Mall. Although it’s across the street from the Ronald McDonald House, that distance is enough to make my heart start pounding. When I do activity, my heart starts pounding. I can feel the thumping in my chest and ears. When heart pounding happens, I’m usually too uncomfortable or nauseous to eat.

June 23, 2018

Dad visited me today. Julia, my sister, also came. We decided to eat ramen at Downtown Palo Alto. Despite the ramen being good, I couldn’t eat it all. In the car I drank an entire protein shake so I felt nauseous.

These are my daily requirements:

  • 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

I set these requirements for myself after transplant so I can recover faster. I need to drink protein shakes because my doctor recommended me to eat more protein. I have a tube inside of me that I used before my heart transplant. Through the tube I would insert nutrient shakes (Nutren 2.0). After my heart transplant, I have an appetite so I can eat my entire day’s calories. If I stop using my tube for 6 months, I can have it removed.

My Dad drove us to California Avenue. California Avenue is where the Palo Alto farmers market is held. My Mom and I went to that farmer’s market and it seemed pretty cool (see June 3, 2018). California Avenue also has a Caltrain station. Caltrain is a public transport train in Palo Alto.

After we explored California Avenue, we dropped off Julia at the Stanford Mall. The Stanford Mall is across the Ronald McDonald House. She wanted to buy clothes at Urban Outfitters.

My Dad and I went to a bookstore in Menlo Park. Menlo Park is a city right next to Palo Alto. The bookstore is Kepler’s Books. We also bought drinks from a nearby cafe, Cafe Borrone.

When we went back to the Ronald McDonald, we met with Julia. We both went to Downtown Mountain View for dinner. Mountain View is farther away from Palo Alto, but their downtown is nice. Mountain View is the headquarters for Google, so you see a lot of young employees in Downtown Mountain View. We ate at an Indian restaurant.

July 7, 2018

My dad and Julia came to visit me today. Every Saturday my dad visits me at the Ronald McDonald House, and today he brought Julia, my sister. We went to Redwood City to watch Ant Man & the Wasp. Before the movie I bought a salad. I hate salad, but it’s one of my daily requirements:

  • 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

After we watched Ant Man & the Wasp we decided to drive along Seaport Blvd. We went to Seaport Blvd in Redwood City for Fourth of July (see July 4, 2018). My mom and I didn’t get to explore the boulevard that day, but it seemed pretty cool.

Seaport Blvd is a boulevard along the bay. It loops around, and in the loop are tons of office buildings. They have tons of areas to sit and watch the sea, which is pretty cool. We drove to a nearby private yacht dock to admire the scenery.

When we got back to the Ronald McDonald House we went across the street for dinner at the Stanford Mall. We ate at True Food Kitchen, a restaurant claiming to have “honest” food. The wait was terribly long, and the service was awfully slow.

July 13, 2018

There was a music festival today at Downtown Redwood City. My sister and dad also decided to visit me today. We went to the music festival, and it was really fun. There was a lot of people and sun, so I tried to sit in a shaded non crowded area. After transplant. I’m supposed to stay out of the sun since I’m more susceptible to skin cancer. I’m also supposed to stay out of crowded spaces in case of infection.

Downtown Redwood City is about a 5-10 minute drive from the Ronald McDonald House. I usually go to Downtown Redwood City because they have a movie theater. After the music festival we watched a movie called Skyscraper. Skyscraper had amazing graphic visuals that almost made up for the plot.

July 14, 2018

Today Nicole’s dad prepared a meal for her church family. Nicole is a girl that’s been in the hospital since May. She was born with a non functioning right artery, and ever since she’s had to replace it with a mechanical one. This was her fifth open heart surgery, but after complications, she’s still in the hospital. Hopefully she gets out soon (see September 20, 2018).

Nicole’s dad is a chef. He built his first restaurant at 18, and started his own restaurant chains. However, when Nicole got sick, she asked for her dad to be with her. He sold his restaurant chains and left Los Angeles just to stay with Nicole.

Every Saturday my Dad visits me at the Ronald McDonald House. He takes me out to have fun for the entire day. Downtown Palo Alto is a walkable distance from the Ronald McDonald House, and at Downtown Palo Alto is a Caltrain station. Today we took Caltrain to Sunnyvale.

We got to the Caltrain station an hour earlier than the next departure, so we decided to get drinks at a cafe in Downtown Palo Alto. Downtown Palo Alto has a lot of restaurants to enjoy, and their own Stanford theater (see July 20, 2018). There’s a famous restaurant, Ramen Nagi, at Downtown Palo Alto (see July 17, 2018). From the Ronald McDonald House to Downtown Palo Alto is wheelchair accessible.

We took the train to Sunnyvale. There’s steps to board the train if you decide to take it. Since I have to stay at the Ronald McDonald House for 3 months, I want to make the most out of my time. I loved watching the passing scenery.

Downtown Sunnyvale isn’t as big as Downtown Palo Alto. Notwithstanding it’s still very impressive. Across the Downtown Sunnyvale Caltrain station is an impressive plaza. Downtown Sunnyvale also has a street that’s called the Historic Murphy Avenue, and it’s extremely beautiful. It reminds me of Downtown Mountain View. You can also check out that place with Caltrain.

Going from Downtown Sunnyvale we took Caltrain back to Downtown Menlo Park. At Downtown Menlo Park I bought a book from Kepler’s Books. The book I bought was The Testing, a book about an intense college competition after the apocalypse. It’s similar to The Hunger Games; teenagers fight each other for a better life.

From Downtown Menlo Park we walked back to the Ronald McDonald House. I was so glad to be back because I walked a lot. I needed to rest for a while. Last year I was in the hospital for a week for calf pain. Ever since then I take Tylenol when my calf pain flares up. Today was a strenuous day, so I took tylenol. I ate my dinner at the Ronald McDonald House.

July 21, 2018

Every Saturday my Dad visits me at the Ronald McDonald House. This Saturday we decided to drive along the mountain.

We drove away from Palo Alto to the Windy Hill Open Space Preserve. We saw a great retirement center which I think would be perfect for my Mom. The mountain was nice, but no wifi, so that sucks.

My Mom and I also decided to walk to downtown for dinner tonight. The Ronald McDonald House is about one mile away from Downtown Palo Alto, so it’s bearable. I try to walk at least 10,000 steps (tracked by my Fitbit) everyday for my physical therapy.

We ate at Wahlburgers. Wahlburgers is a restaurant chain owned by Paul Wahlberg and partnered with his two brothers, one of which is the famous actor Mark Wahlberg. Wahlburgers even had a TV show made out of it.

We decided to walk back to the Ronald McDonald house by cutting through the Stanford Mall. If you’re at the Stanford Mall at night, it’s beautiful. The lights are still on and the music still plays, but no one’s there so you can enjoy the moment.