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 25, 2018

I woke up early today at 7 AM. Today’s my biopsy.

A biopsy is when a tiny machine travels through your veins and grabs a piece of your muscle tissue. I’m having a cardiac biopsy, which means they’re getting muscle tissue from my heart.

They put an IV in me, then injected me with medicine. I’m doing full anesthesia, which means I’ll be put fully to sleep during the procedure.

At my other biospies they can gradually reduce my anesthesia until I don’t use anesthesia anymore. The less anesthesia I use, the faster I can recover and get out of the hospital.

When I woke up, my thighs were orange and there was a band aid over my groin. I had to wait two hours before I could get up again. After those 2 hours, I was discharged from the hospital.

May 27, 2018

My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!

And can you blame me about complaining a lot? In 1 year I:

  • learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
  • learned that my heart was failing
  • my normal life was taken away
  • got my first IV
  • was considered for heart transplant
  • missed 1/2 my school year
  • In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
  • considered transplant by doctors
  • had 3 hospital stays in 3 months in a row
  • considered dropping out of school
  • was listed for transplant
  • got a transplant 2 weeks after listing
  • suffered recovery
  • still suffering recovery

All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.

Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.

Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.

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.

August 29, 2018

I had my biopsy today. A biopsy is a procedure to get a sample of tissue from your muscle. For me, they’re getting a sample of my heart tissue to test how much rejection I have.

I met Kayano’s mom at the hospital lobby. Kayano was my next door neighbor at the Ronald McDonald House. I hung out with him a few times and celebrated his birthday with him. Kayano has severe kidney failure, and has to be put on dialysis before he can be accepted on the transplant list.

Kayano is currently at the Lucile Packard children’s Hospital school. Kayano’s mom says the hospital school is super easy, but when I was at the hospital school it was hard to catch up with my classes at Foothill. Koda, Kayao’s little brother, is at the public elementary school in Palo Alto. The Palo Alto District is supposedly one of the best public school districts in the country.

I used less anesthesia this time, so I was awake during the biopsy. Surprisingly, it wasn’t painful. There was just pressure. Instead of crying out in pain, I just laughed.

Before I could be discharged the doctors examined me. They told me my prograf levels were good, and my medications would stay the same. I was happy with how the biopsy went. However, I can’t swim for a week in case the wound gets infected.

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.

January 16, 2019

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.

April 24, 2019 – Biopsy

Today I had a biopsy.

What’s a biopsy? A biopsy is when they take a piece of tissue. I had a cardiac biopsy which means they took a piece of tissue from my heart.

It was the same old, same old routine. I went to the Short Stay Unit, had a bunch of anxiety for putting the IV in me (because needles hurt), got the IV in me, met the doctors, and went in for the biopsy.

The biopsy is always in the groin. They’ve never done it in the neck before because of my scar. 

During the biopsy, I prefer not to be unconscious. The more anesthesia you have means the more time you spend to recover. I’m pretty sure my ultimate goal is to go in and perform the biopsy without any anesthesia (not even happy juice), so that way I don’t have to get an IV in me. If you can’t tell, I hate IVs.

However, this time I faltered. In my biomedical sciences class at High School we watched a video of a biopsy, and I was thinking of that. I kept thinking of that string thingy going through my blood veins and down to my heart and I guess that freaked me out. They had to give me some more anesthetics to calm me down. Then I got high.

I hate how I have to lie down for four hours in recovery. I’m not allowed to roll over, sit up, or do anything. Just lie down and do nothing.

My doctor came in for a regular check up. Same old, same old. What medications I’m taking, my blood pressures, and any signs of illness. 

My doctor said she was excited to come to my cookbook release. Coooooool. I’m still high tho.