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 9, 2018

Today is my first biopsy.

A biopsy is a procedure where they take a small machine that goes through your veins, and takes a piece of your tissue. For me, it’ll take a piece of my heart tissue. That way, the doctors can test my rejection.

The nurses put some “happy juice” inside of me. I instantly got high. I actually like this feeling! Then I went to sleep.

When I woke up there was band-aid over my incision area. I felt nothing during the procedure. I think it only took 15 minutes. I was told not to move for 2 hours. I was feeling really sweaty by the time that 2 hours was up. The reason was because of my hot and cold sensations; I feel extremely hot when I lie down.

I’ve resorted to watching tons of movies.

Today I’m watching Lord of the Rings.

My hot and cold sensations are so uncomfortable that I can’t even sit comfortably. I always have to adjust myself so that I don’t get sweaty.

I also keep hearing my heart pounding. It’s always THUMP, THUMP, THUMP, all the time. Even when I’m doing nothing!

I also can’t get any sleep. None. I’m doing nothing all day yet I can’t get any sleep. That sucks.

June 20, 2018

I had a biopsy today. A biopsy is when they take a sample of your muscle tissue. For me, I’m having a cardiac biopsy, which means they’re taking a sample of my heart’s tissue.

We went in for the biopsy at 11 AM, however the biopsy was delayed until 1 PM. Then the biopsy was delayed to 3 PM. It was okay; I watched some movies while waiting. Someone also came in and gave me a $15 Apple gift card for waiting.

This biopsy I wasn’t put on much anesthesia, so I could recover faster. I went in and out of consciousness during the procedure, but I was high so that’s okay. I love being high. When I was in consciousness, all I felt was pressure: no pain.

I left the hospital at 5 PM. The procedure was very short, but recovery takes a majority of the time. That’s why I left so late.

October 10, 2018

Today was a PSAT testing day at my school. The PSAT is a test that prepares you for the SAT, and if you do really well on it, you can get a scholarship. This test is only offered one day a year.

I couldn’t take the test because today was my biopsy. A biopsy is an examination of tissue from the body. They poke me with a needle and remove tissue from my heart to test how much rejection I have.

Each biopsy, I’ve decreased each anesthesia dose. The less anesthesia you use, the faster you recover. This time, I wanted to try the biopsy without anesthesia. Since my recovery time was going to be short, I went to the Short Stay Unit instead of the Treatment Center. The Short Stay Unit is a unit where patients stay for a couple of hours/days. The Treatment Center takes you to the pre operation unit.

While walking to the Short Stay Unit, we bumped into one of the hospital school teachers. My mom asked her about college advice. We went to other college experts, but since my case was special they didn’t know what to do. The teacher told me there were a bunch of scholarships open to children to me, and the next time I go to Stanford to arrange an appointment with her.

During my biopsy, they inserted some “happy” juice. I was awake the entire time, but I didn’t feel pain. Just some pressure.

Afterwards, I had to lie down for an hour. Then I would walk a circle and lie down again. The nurses then checked to see whether the incision bled. We repeated that for 5 hours until the incision didn’t bleed. By the time we were discharged, it was 8 PM. With traffic, we got back home at 10.

July 1, 2020 – Annual Study

Today I had my annual study. My annual study is my biopsy, but more comprehensive because it’s done to evaluate my heart’s function at the end of the year. It was initially scheduled for April, but because of the coronavirus, it’s been rescheduled to today.

Miranda, my friend from transplant camp, told me about her biopsy experience. She had to get a coronavirus test two weeks before the procedure. The doctors at Lucile Packard are really cautious about COVID19.

On June 24, I waited for the coronavirus test. Luckily, they’ve advanced testing so it wasn’t two weeks before. We awoke early and drove in line about 30 minutes earlier because the tests at Alameda County Fairgrounds usually run out pretty fast.

“The test was like a feeding tube, but better,” Miranda told me. That’s what I thought about when the doctor put a test up my nose. It wasn’t that bad, but it did make me cry. I think it’s reflexive to cry, but luckily it wasn’t for that long; it only had to swab for 10 seconds. Overall, it was okay.

Today I drove to Lucile Packard. I don’t have my license yet (thank you coronavirus for closing all the DMVs), but I did have my permit. It was my first ever time driving to Palo Alto, which was a nice drive. The Dumbarton Bridge was also not as hard as I expected.

The first thing they do when you enter is check your temperature. Of course, temperature isn’t always the holy grail since people can be asymptomatic. They also require masks and hand sanitizer. 

It was so nice seeing all the nice nurses in the short stay unit. Especially since they’re all super sweet, I’m glad they’re all doing well and staying safe.

We kind of got into the swing of things. The Cath Lab was ahead of schedule, so I changed into my hospital gown, got an IV (ow), and had anesthetic put on my groin (point of entry). They took some blood from the IV but I already had a blood draw earlier in the day. Did you know they’re not taking Prograf times anymore?

I was wheeled down to the Cath Lab, and then everything started. This time, since the annual study is more comprehensive than a biopsy, I did get the same amount of happy juice as last time. Anesthesia is great. I love the feeling of being high.

Another thing was everyone was wearing masks, even me. During the procedure, I didn’t notice the poking and shifting as much since I was high, but it was there. 

You have to lie down (can’t even raise your head) for six hours. I was asleep for two hours, but that still left four hours passing by. I talked to my mom and watched Back to the Future.

I was sad to learn from Lindsay that today was my last biopsy. I didn’t even get to say goodbye to the biopsy team 🙁 Since I turn 18 in October, I’ll be transferred to Kaiser and won’t be a pediatric patient anymore.

Lindsay told me that a few pediatric heart transplant recipients did contract COVID19, but luckily they recovered. That was good news, but I forgot to ask about the long term effects. I’m really glad I transferred to James Madison High School. At the time, Foothill couldn’t be bothered to move to distance learning. Once I saw “First death in the United States from coronavirus,” I was like I have to go.

My blood pressure today was higher than normal. Usually I like to be under 120/80, but today they were above that. That’s still in the normal range, but for me that’s not ideal.

After I was discharged, I couldn’t even walk. My groin was so sore, and I had to be wheeled on a wheelchair. 

The lobby of the hospital was emptier than usual. Probably because of the coronavirus, but it’s not like the hospital was a great place to be in the first place.

I was wheeled to the cafeteria and ate my meal outside. Afterwards, my mom drove back home to Pleasanton. My next appointment is in September.