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 8, 2018

Today I went outside for the first time since surgery.

At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.  

It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.

I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.

I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.

A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.

I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.

June 4, 2018

I watched a movie with my Mom today. We went to Redwood City Downtown to watch Avengers: Infinity War. When I was shortly out of my transplant surgery I was so uncomfortable. To ignore the pain I watched a lot of movie series. One of the movie series I watched was The Avengers.

Avengers: Infinity War is the 3rd movie in the Avengers series. I was so shocked about the ending. Since I watched a lot of Marvel movies, I expected the heroes to always be fine in the end.

After the movie my Mom and I ate at the Old Spaghetti Factory. The Old Spaghetti Factory is a restaurant next to the movie theater. However, since my heart was pounding I couldn’t eat much spaghetti. After my heart transplant, I’ve been experiencing my heart pounding after physical activity. It makes me so uncomfortable I can’t focus on something, not even eating.

That’s not good since I have a tube inside of me. The tube was used to put extra calories and nutrients inside me, but now I’m trying to survive without the tube. If I can’t eat, then this is an impossible mission.

Before transplant, I tried to get off the tube. However, it was really REALLY bad timing. At the time I tried to get off the tube was when I had protein losing enteropathy. My heart started to fail, so other parts of my body were affected. Protein losing enteropathy is when protein is lost by the body. Since I wasn’t getting extra protein, I started to become skinnier and my weight dropped. I needed to get back onto tube feeding.

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.

August 9, 2018

Today I went to Make-A-Wish headquarters in Oakland. At 7 AM my Mom drove us to Oakland’s Chinatown to park our car. First we went to a local bakery to buy some breakfast and take my medicine.

Afterwards we went to the Bay Area Make-A-Wish headquarters. The headquarters is in an office building shared with other companies. After getting directions by security, we went inside these huge double doors. The first thing you see is Make-A-Wish Greater Bay Area behind the reception desk. The walls were painted light blue and the floor was blue carpet. The waiting area featured books that had pictures of other people’s wishes on there.

Beth was excited to see me! Beth is the Make-A-Wish coordinator that plans out all the wishes. At the Ronald McDonald house she called me to figure out more details. Beth told me the headquarters used to be at San Francisco, but then moved to Oakland. She also told me that the headquarters usually don’t have kids visiting. Usually the kids are at the hospital or at home, so me coming was rare.

Beth, my Mom, and I walked past portraits of other children with their wishes. There’s actually a girl who made a fashion runway show. She’s also a heart transplant recipient.

Edit: I met her August 11, 2018, at the transplant reunion party! She’s in the middle wearing a blue shirt:

The girl who did the fashion runway is in the middle.

Victoria, the chef granting my wish, came from Bart. She’s a nutritionist and personal chef that creates healthy meals for others. She said when she was a child, her aunt had a heart attack in front of her and died. That’s when Victoria teared up. One day, Victoria quit her job and went to culinary school. Since then she’s been a successful personal chef. Her goal is to show people a healthier way of eating.

I explained why I wanted to do this. I have a tube inside of me. Before transplant, I didn’t eat enough food each day, so through the tube I insert food inside of me. I would plug my tube to a machine and go to sleep. The next day I would skip breakfast, eat a light lunch and dinner, plug myself in, and repeat. After transplant, I have an appetite. I can start eating full meals every day. I want to develop recipes so that I’ll have enough food to not use my tube anymore. If I eat without my tube for 6 months, then my doctors can take it out.

My Mom, Victoria, Beth, and I went to take a picture in front of the Make-A-Wish logo.

Victoria will meet up with my Mom and me at our own house for cooking lessons (see August 25, 2018).

My Mom and I also checked out a government building nearby. Pictures above!

November 2, 2018

Today was my doctor’s appointment. Since my Mom is in Paris, I went with my dad instead. We left around 7 AM.

At the doctor’s appointment, I went in for an echo first. An echo is basically an ultrasound for your heart. Then I met with my doctor.

A funny story about my doctor: he knew me since I was a baby. When I was at Kaiser being treated for my hypereosinophilic syndrome, I was his first echo. When I was older and transferred to Stanford, I was also his patient. He said he only knew two people with hypereosinophilia, and I was both of them.

I recited my medication: 1 mg pill of Prograf 2x a day, 360 mg tablet of Cellcept 2x a day, 120 mg capsule of Cardizem 1x a day, and 100 mg of Gleevec 1x a day. If you’re a transplant recipient, you probably know all of them except for Gleevec. By my 3 months post transplant, I got off many drugs, for example Prednisone.

I lost a pound between now and 3 weeks ago. The doctor advised me to eat more protein. Since I am exercising, I’ll burn my calories and gain muscle. I’ll start drinking protein shakes again.

It is 6 months post transplant. Now I’ll only have hospital clinics, echo, and blood draws once a month. I’ll also only have to do biopsies once every 3 months.

I almost left the appointment without getting the flu shot. Since I am fresh out of transplant, I have to get my flu shot in 2 phases. During the last doctor appointment, I had my first dosage. This appointment I got my second dosage.

December 12, 2018

I think I’m losing hope.

My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.

Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.

I’m so sad.

Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.

The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?

Yet.. yet I can’t survive without it. That makes me sad.

I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?

I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!

And it’s not working!!!

Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.

Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.

I’m also nervous about starting the medication.

When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.

Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.

It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.

So what am I going to do about it?

In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.

For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.

The future of my body depends on these 4 months between today and March. I need to gain weight.

December 15, 2018

Ever since my doctor appointment with the G-tube doctor (see December 12, 2018), I’ve been checking my weight.

I’m around 100 pounds, but my scale is weird.

I’ve been checking my weight in the morning and at night, and I could weigh 104 pounds at night, but 102 pounds the next morning.

I’ve also been noticing my eating patterns.

I think the problem is that I’m always constantly hungry.

I think I’m so used to hunger spasms that I’ve learned to ignore them, and they eventually go away.

When I do eat, I quickly become nauseous.

Hopefully, that’ll change.

Also, I have not started on those appetite pills yet. I want to have Stanford approve them before I start taking them.

I have 3 months to gain 10 pounds. Gotta get that extra fat.

March 26, 2019

Tomorrow I’ll meet with my G-tube doctor, and he’ll decide if it’s time to pull the G-tube out.

I’m scared, because in the past I’ve never had a good experience with that doctor. Like, never.

The G-tube is something I rely on, and it’s been hard trying to quit. I’m sorry if I’m not chronically ill enough for your sympathy.

Also, thinking about March 24, 2019, I have to go through with this entire process in fifteen years. Do I even need to pull it out?

Once it’s out, it’s out. For good.

That means if I slack off on nutrition, or become sick enough that I can’t eat, the door is closed. Forever.

Or if I go through surgery to get it inserted again. 😰

Would it be better in the long run to not remove it? Geez, I don’t want to think about it.

March 27, 2019

I call today a success!

Remember December 12, 2018, when the G-tube doctor told me I needed to gain ten pounds in three months?

I have gained ten pounds!

I told the doctor that I don’t think the medication need me feel more of an appetite, so I’m going to stop taking the Periactin (Cyproheptadine).

My mom is still a little nervous (and I am too! March 26, 2019) about pulling it out so we’ll wait until June. During June we’ll pull out the G-tube for good!

Since I have had the G-tube for almost my entire life, it’s most likely the hole won’t close up on its own. We might need stitches to close up the hole for good.

Also, when we pull the G-tube out, the hole will be leaking for a few days. I will be dripping everywhere, so I predict a big problem.

Oh well, we’ll cross that bridge when we get there.