July 24, 2018

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”.

July 25, 2018

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.

August 11, 2018

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.

The boy who spoke is the one lifting up his shirt. The girl is the person next time.

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.

The woman with the purple shirt is Lizzy Craze.The woman with the blue shirt is my social worker. The woman with the grey shirt is my doctor.

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.

The girl wearing the white shirt is Maddy. The girl wearing the blue shirt is the Make-A-Wish person that made a run way show (see August 9, 2018).

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.”

September 6, 2018

Noah came to Stanford this weekend. Noah is a 10 year old boy I met at the Ronald McDonald house that was receiving an experimental drug for his stomach cancer. Nolan and I send each other gifts (see August 7, 2018).

After school, my mom and I drove from Pleasanton to Stanford. We met Noah at a seafood restaurant. His mom was so excited to see me. Noah had to draw a lot of blood so he was pretty tired. He almost fell asleep while eating his food.

His mom told us that Noah’s tumor has shrunk so much, that they might surgically remove it. However, they told me that the medication might work so well that the tumor might go away on its own.

They said that the care at the Stanford hospital was exceptional. At Phoenix Children’s Hospital the nurses didn’t give great care. The tumor was on Noah’s back, so his parents explained not to touch his back. However when he went in for his CT scan, the nurses grabbed him on his back. Noah screamed out in pain. At Stanford’s hospital the nurses and doctors spent a half hour trying to work out the logistics for the CT scan. Where the pillow would go, where to position his back, how to transfer him on the bed. This is because the nurses at Stanford have to go through 7 rounds of interviews before being hired. Their care is exceptional.

After eating, we went to a Starbucks restaurant at Town & Village, a plaza in Palo Alto. Noah also got gelato from a nearby shop. Noah is doing great at his elementary school. He skipped a grade so he’s in 4th grade instead of 3rd. His teacher is actually a friend of his mom. His mom explained to the teacher about what happened. He has special accommodations, for example, he doesn’t participate in PE. Instead, he helps the teacher carry basketballs, We talked to his mom about a 504 plan.

Noah’s parents said it was really lucky that I had my Mom. My Mom cares about me a lot, that’s why she brought me here today.

After saying goodbye, we drove back home.

September 21, 2018

I had a swim lesson today. My coach knows about my heart transplant, my scar, and the fact that I’m immune compromised. She tells me if I need a break, then I should tell her.

It’s amazing that I’m swimming so long. Before transplant, I did swim but only 10 laps. What happened each lap was:

  • ¼ through: I run out of breath, my heart starts beating faster
  • ½ through: I gasp desperately for breath, my heart starts beating faster and louder
  • ¾ through: my heart is beating furiously, pain builds up inside my chest

I don’t feel any pain in my chest after swimming, which is a miracle. I run out of breath in one lap, not a ¼ lap.

My city, Pleasanton, is a very athletic city. Every one of my classmates is either doing soccer, football, hockey, basketball, cross country, lacrosse, tennis, golf, swim, water polo, marching band, or cheerleading. I think “I could’ve been that.”

In the lane next to me are kids my age swimming like pros. They have swimming scholarships towards a D1 school, and I can’t help think “I could’ve been that”. I was born normal, and if it wasn’t because of stupid hypereosinophilic, I could’ve played sports.

After transplant I have a new life. Instead of “I could’ve been that” is “I can be that”. In a few years, I can catch up to them and be as good as them. I have a chance, and that’s what matters.

October 27, 2018

Today is 6 months since my heart transplant. To celebrate this, I bought a Christmas ornament with Ray. Ray was at a conference on my birthday, so this is our make up “celebration”. I had “Justin’s Heart Transplant April 27, 2018” personalized on my Christmas ornament.

The 6 month mark is important because that’s when I was predicted to be able to start exercising (I already did). After 6 months, I can start training for running.

November 8, 2018

I had a swim lesson with my swim coach today. She introduced me to a swimming in intervals. She told me to swim 2 laps (or one lap, whichever you consider 50 meters) and rest for 40 seconds, then repeat. Usually with advanced swimmers it’s a lot shorter, but for my fitness it’s hard. I did this for 20 laps (10 laps) or 500 yards.

After just one lap I started to hear my heart pounding and my breathing got harder. I don’t know if that’s normal for other beginning swimmers or if it’s unique toward my heart condition, but I know I can handle it with more practice.

I had a great time swimming today. Before transplant I couldn’t swim as much as I can today, and I’m so grateful for this opportunity to exercise and play sports.

November 15, 2018

I also interviewed Mr. Lewin. Mr. Lewin is my math teacher. He’s the one that told me to write my story (see October 5, 2018).

He’s so nice to me. He told me that it was amazing that I was doing so well socially, academically, and physically. As a teacher, he’s seen other students struggle, but not with anything as life threatening as me. As a teacher, he’s also seen other students with great families, communities, education, and finances, yet they make bad decisions and end up falling to the bottom.

If you’re in the hospital, just know that you need to have hope. Hope is the one thing that’s guaranteed by yourself. When you survive your ordeal, you’ll become stronger as a person. That’s something to hope for.

A student spilled water onto his floor multiple times. The floor is carpet, so mold can grow on it. Mr. Lewin chastised that student, because if I get an infection from the mold, then that’s… bad.

December 10, 2018

Today I had an orthodontist appointment. I didn’t need to take antibiotics for the orthodontist like before since I’m already 6 months post transplant.

I also had a swimming lesson. Reflecting back to before transplant, I’m so glad to be able to actually exercise. Doing sports is awesome, even if I’m really bad at it.

December 25, 2018

Merry Christmas everyone!

13 (or 14?) years ago from today I was in the hospital for my hypereosinophilic syndrome.

Last year from today I just came out of the hospital.

I am grateful for being able to take my semester finals this year and stay at home with no pain.

My life is amazing right now.

Merry Christmas and Happy New Year!