I know a lot of people don’t have time to read tons and tons of journal entries, so just watch this instead. 😄 Don’t worry, it’s not cheating.
How to be an organ donor:
I know a lot of people don’t have time to read tons and tons of journal entries, so just watch this instead. 😄 Don’t worry, it’s not cheating.
How to be an organ donor:
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.
I have so much pain. The doctors lied to me. They said that I would have tons of energy after transplant. That’s a lie. I feel horrible. There’s pain everyday. There’s pain always.
Is my heart okay? Was a transplant right for me? This heart works worse than my damaged heart. What if all this pain was for nothing?
This heart is always pounding. Every second I’m awake I can feel and hear it. It’s always THUD, THUD, THUD.
I have anxiety because of the heart transplant. I have never had anxiety as bad as this before transplant. What if this heart stops pounding? My staples feel like they’re going to pop and my chest is going to open up.
I HATE THIS POLE. Why is there such a big pole next to me! There’s tons of cords coming from my body. I always get myself tangled. There’s more plastic in me than the Pacific Ocean.
Why the hot and cold sensations? One moment I’m hot, the next moment I’m cold. I can’t sleep because of this (and also the pain). I lie down and in minutes I start sweating. I sit up and I’m instantly freezing.
Physical therapy is the worst. They want me to walk around the unit three times a day. I can barely sit, not even walk. When I walk I have to constantly take breaks. I also have to concentrate to not trip and fall over my lines connected to my IVs, which sucks.
I try to distract myself from the horribleness of this situation by watching TV. Nothing can distract myself from the pain. It’s always nagging and tugging at me. Like, why?
I’m so sad. I can’t explain how sad I am. Everything seems hopeless. This heart transplant was supposed to be my treatment, but it’s not working. All it’s brought was pain.
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.
My church family visited me. Since today is Sunday, they came after church ended. I’m not radically Christian, but after all that has happened, I do believe miracles happened (see June 13, 2018). My church family was really supportive of my heart transplant.
I also met Joe today. Joe is the father of Nicole. Camp Taylor posted about Nicole (see June 5, 2018). Nicole is in the hospital after complications after her 5th open heart surgery (see September 20, 2018).
Joe is a chef. He had a fast casual teriyaki restaurant chain in Southern California. He built his first restaurant by hand at 18. When Nicole asked her dad to be with him, he sold his restaurant chain to have more time with his daughter. Being in the hospital is a challenge, so you need to have as much support as possible.
Joe and Nicole have place their faith on God. They’re both radical believers. Although Nicole is 8, she has a boyfriend: her pastor’s son. Nicole is loved by God, and she is supported by her church family. When Nicole was in the hospital, her church family went in a circle prayed for her.
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:
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.
I swam for the first time in seven years today!
I’ll start off with the swimming. I quit swimming when I was eight. I didn’t see the point in it since it only made me exhausted, and there were no results. I was swimming for 3 years, and I only managed to build up from 10 laps, 250 yards, to 12 laps, 300 yards. Swimming for me was exhausting. I wouldn’t even be halfway through a lap until my heart started pounding, my breathing would become desperate, my ears started ringing, and my vision would be blurry. That was my life.
It makes me sad that I couldn’t play sports like my classmates. If it wasn’t for my heart I would’ve advanced in swimming, maybe be on a team. Maybe I could’ve gotten a scholarship to college if it wasn’t for my heart. I could’ve played other sports too, like soccer or basketball.
After seven years of not swimming, I felt so much better in the water. The water soothed my joints and massaged my muscles. Immediately after transplant I was so sore that I couldn’t even stand.
I plan to start swimming as a sport. As I mentioned above, with my damaged heart I didn’t have the ability to play sports and therefore I was sad. After transplant I have a chance, and I’ll take it.
Today is my doctor’s appointment, and tomorrow I’ll leave the Ronald McDonald house. July 27 is 3 months post transplant, but since I’ve been very healthy I get to leave early. I don’t know whether I’m happy or sad, but I know once I leave I’m officially “healthy”.
Today I left Ronald McDonald house. It couldn’t be more bittersweet.
For one, the Ronald McDonald house was probably the happiest time of my life. I met a lot of people that I became friends with. They provided a network of support which is hard to leave. Everyday was also an adventure. I could walk across to the mall, get food from the common area, talk to people in the kitchen, or explore downtown Palo Alto.
On the other side, I’m glad to leave. I hate being in the hospital. Leaving means I’m healthy, and I want to be normal again. Even though I’ll have a hard time being “normal” again once school starts, I will be.
I’ll always remember my time at the Ronald McDonald house. I’ve met so many people that had amazing stories. I’ll always keep them in my mind.
Today was the Transplant Reunion Party. The Transplant Reunion Party is an annual gathering of organ recipients hosted by Lucile Packard Children’s Hospital at the Stanford Alumni Center. I got to meet people just like me!
When I arrived, there was a booth that awarded transplant patients with a medal saying “Your Type Of Organ Transplant Recipient”. Mine said Heart Transplant Recipient. They were shocked when I said I was only 4 months out of transplant. When I asked what organization they were, I became the one shocked. They were a club from my very own high school! More specifically the Pink Dot Club from Foothill High School.
Maddy, the club president, said her cousin died while waiting for a heart transplant, and that’s why she started the Pink Dot Club. Its motto is to raise awareness for organ transplant, and hopefully inspire people to become donors.
Discovering this club was so amazing because now there’s an entire club at school that understands my struggles. Once I start school, I’ll definitely be an advocate for them.
I was pulled aside during our conversation because there was another heart transplant patient speaking. This guy was younger than me, probably 10 years old. He had his transplant in March, not much shorter than I did.
His mom was starting to tear up. She described him being in the hospital and how hard it was. As any mother would, him suffering was also her suffering. When she got the call for the transplant, they were both so excited. It would be a new birthday! He had to be airlifted to the hospital, but he said he liked the helicopter ride. After transplant, he didn’t have to stay in the hospital anymore. His heart failure was over. He could now be a normal boy. They thanked Lucile Packard for their wonderful care, because all the nurses and doctors gave him wonderful support.
After his speech, I met with him and another girl. He’s a really nice guy! He appreciates his new heart everyday. I learned he also likes to swim. His mom was nice too. He’s really lucky to have a mom so well spoken that loves him so much.
The girl was another heart recipient. She was the girl at Make-A-Wish that made a fashion runway show (see August 9, 2018). She had her transplant when she was 1. She was put on the list and had the transplant within 24 hours (24 HOURS! Wow) of each other. At 11 years old, she’s doing volleyball, cross country, and gymnastics. She’s a normal athlete, and that’s awesome. I hope in the future I can be an athlete. She told me that because of my new heart, I can go to Transplant Camp, a camp where the only campers allowed are transplant patients under 18.
I then gave my social worker my letter to the donor family. My social worker spoke to me earlier about reaching out through a letter, so I spent last night writing it. I hope they’ll want to reach out too. I’d love to meet them.
Another person I met was Lizzy Craze. Lizzy Craze is pretty impressive.
She is the only heart transplant recipient in America, and likely the world, to survive 30 years with the same donor heart she received as a toddler… Lizzy was the youngest successful heart transplant recipient at the time of her transplant.Stanford Children’s Health
Today she runs marathons and participates in triathlons. I told her of my dream to run, bike, and swim. She told me with my new heart all I needed to do was train.
Maddy, the club president for the Pink Dot Club came to return my medal. Together with the girl (the boy was out of sight) we decided to do some activities together. It was really fun experience. We colored plain converse shoes with rainbow sharpies and brushed thick paper with luscious amounts of paint. At the end of the Party, we exchanged numbers. The girl promised me to send a link to the Transplant Camp. Maddy and I will be working together on the Pink Dot Club. We’ll also see each other in school.
Outside of the Stanford Alumni Center, my mom and I ate sandwiches under the tree. She asked me “Did you have a good time?” I answered “Definitely.”