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.”

August 24, 2018

Today the Pink Dot Club was featured at the Club Fair. The Pink Dot Club is a club at my High School that raises awareness for organ transplant. The Club Fair is an annual gathering of clubs at my High School for students to explore.

I left my class early to help the club president, Maddy, set up her booth. The sun was burning intensely, so I whipped out some sunscreen and spread it on my skin. Skin cancer is much easier to contract after transplant.

The substitute librarian stopped and looked at our club booth. She read the description and asked for more information. Maddy introduced the club and I introduced myself as a heart transplant recipient. I was shocked to learn that the substitute librarian had a kidney transplant.

Amy McCarthy, the substitute librarian, had her transplant when she was 40. I talked to her and she asked me what medication I was taking. I said Prograf, Cellcept, Cardizem, and Gleevec (my chemotherapy drug to control my eosinophils). She said it was amazing how I was only 4 months out of transplant and was taking such few medications. I said it was amazing that I wasn’t the only person to have a transplant. Someone I could finally relate to, which I described in detail at my first day of school, August 13, 2018.

Suddenly it seemed that I wasn’t the only person that’s gone through this. It’s so strange transitioning from being in the hospital to a “normal” life. I’m glad to have guidance from an older adult.

Once the club fair started, I met the other officers of the club. They seemed nice, but they didn’t pay much attention to me. People kept on coming to the booth. I didn’t say I had a heart transplant 100% of the time because I was still deciding if I should be normal.

October 2, 2018

Today was the Pink Dot Club’s meeting. It was supposed to be dedicated to Nicole, but instead the club officers talked 90% of the time about a guy that got detention for criticizing his Honors English teacher.

Nicole was a beautiful girl that died at 10 (see September 20, 2018). For her entire 10 years, she has fought to be alive. Every year she had to be back in the hospital for another painful surgery. Club officers, do you even know, can you imagine, do you understand the pain? The pain that she and her family goes through? Her dad sold his restaurant chain to be with her daughter. Her mom always  with Nicole at her side. Her sister choose to stay with her instead of her grandparents. She said “I love Nicole, and I want to be with her.”

Club officers, that guy that got sent to detention because he confessed that he hated Ms. Hewitt or whatever has nothing to do with the club. Yet you spent more time on him than Nicole during the meeting that was supposed to be dedicated to her. Club officers, that guy is alive. He is breathing, he is eating, he isn’t in pain. Nicole is dead.

Club officers, I wonder how much you even care about your own club. Why are you officers of this club, when you can’t even dedicate a meeting without talking about your AP classes? Oh wait, I know! College! Club officers, you’re only here because you want to get into a good college. None of you care that a 10 year old girl is dead, you only care that it’ll look good on your college applications.

Nicole was in so much pain, she woke up screaming. She would curse and shout at the nurses until they put her back into a coma. Club officers, I hope that one day, you’ll realize how conceited you guys are. You guys do nothing to help those in the hospital. Oh my god “I made cards! I’m doing a dance vid for those in the hospital!” Except you’re doing that because you want to. None of you will actually go on a school day, skip your APs, and visit them in the hospital right?

October 30, 2018

Today was another Pink Dot Club meeting. We made art kits for children at the UCSF Benioff hospital. Maddy brought plastic bags, brushes, mini canvases, and paints. We decorated the bags with stickers. The stickers said “You’re the best!” or “Love!” or “BFF”.

In my Biomedical Class we were talking about a project about how to introduce to a person they have a medical disease. If you’re reading this blog, then you’ve probably experienced this before. In reality a doctor just talks to you and says you have …. However, in our class we’re supposed to make an Instagram post or a song for the patients. Which is totally weird.

My teacher talked about his sister and mom going in for their breast cancer surgery. They met with a bunch of doctors and surgeons to remove the cancer. It was devastating for them.

I raised my hand to share my experience. Here’s my experience going in to be evaluated for the transplant list:

My mom told me I needed a heart transplant in the car. It was undoubtedly shocking. I couldn’t believe I was THAT sick. I wasn’t dying in a hospital, I was a normal person. My mom explained that she and Dr. Saba were talking about transplant for a couple of moths.

The official evaluation was at Stanford. I had to meet with a child psychologist, nutritionist, social worker, and doctors. The saddest part of the evaluation was the transplant education. Someone from the transplant team talked with me about what transplant was, how it works, waiting for transplant, and after transplant. I learned about rejection, the statuses, and my risk for cancer. The transplant education was so despairing that my heart started to act up. I never told her because I didn’t want to be deemed as not ready for transplant.

After the education I was rejected from the list. It was understandable; I was too healthy. A lot of the kids on the list need it more desperately than me. I was re evaluated for the transplant list on April 10, and they let me on as a status 2. The list has different statuses: 1A, 1B, and 2. 1A is the people that need it the most while 2 is the people that need it the least. Since Lucile Packard Children’s Hospital didn’t have a status 2 transplant for 4 years, I was on there for a taste of being on the list. It was highly unlikely I would get a heart.

2 weeks later I got the call.

November 27, 2018

Today was a Pink Dot Club meeting. We watched the videos submitted for the UCSF Benioff Children’s Hospital (see November 25, 2018 for my video). We watched ‘This is my Story #1” first. It took the entire period.

The club president still hasn’t watched “This Is My Story #2”. That video was my transplant story. It’s the most important video because it supposed to give the patient’s hope.

After the Pink Dot Club meeting, I shared “This Is My Story #1 & #2” with Mr. Lewin, my math teacher. He’s really interested with my story.

video
video

December 23, 2018

I was wrong about Maddy.

Today I went to Happy Lemon to meet up with Maddy, the Pink Dot Club president. The Pink Dot Club is an organ donation club at my High School.

Remember October 2, 2018? That was the Pink Dot Club meeting which was supposed to be dedicated to Nicole. When Maddy glossed over the fact that Nicole died to talk about a class instead, I got mad.

Here’s an excerpt from my journal entry:

Club officers, that guy that got sent to detention because he confessed that he hated Ms. Hewitt or whatever has nothing to do with the club. Yet you spent more time on him than Nicole during the meeting that was supposed to be dedicated to her. Club officers, that guy is alive. He is breathing, he is eating, he isn’t in pain. Nicole is dead.


Club officers, I wonder how much you even care about your own club. Why are you officers of this club, when you can’t even dedicate a meeting without talking about your AP classes? Oh wait, I know! College! Club officers, you’re only here because you want to get into a good college. None of you care that a 10 year old girl is dead, you only care that it’ll look good on your college applications.

Yeah, that’s a little passive aggressive. Or just aggressive.

Later that day I emailed Amy McCarthy, someone who had a kidney transplant. This is another excerpt:

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.


Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Reflecting back, I wasn’t angry because they ignored Nicole. Deep down inside, I think I was mad because I would never fit in with them.

If they glossed over Nicole’s death, then it implies they care more about their classes than someone that just died.

And their entire premise is for organ donation, and helping those waiting for an organ.

If they don’t care about organ donation, then where do I go?

Well, I was wrong. Or at least about Maddy.

Maddy is doing the Pink Dot Club because she wants to, not because of college. In fact, she didn’t even have college on her mind when creating this club.

It was because her cousin (who’s also named Justin) died from a heart disease.

I thought, “Her cousin just gave her the idea, but she did this for college.”

I was wrong, so I’m sorry Maddy.

January 22, 2019

Today I spoke in front of the Pink Dot Club.

Well, I spoke WITH Amy McCarthy in front of the Pink Dot Club.

I insisted for us to speak in different days, because our stories take more than ten minutes. However, Maddy told me the schedule was too tightly packed for us to do our speeches on different days.

Yeah, sure. 🙄

Anyways, here it is. Maddy recorded the video.

Hi, my name is Justin Wang.

14 years ago on Christmas day I was rushed the hospital. I was pale, nauseous, and throwing up. It took the doctors a month to diagnose me with hypereosinophilic syndrome.

What is hypereosinophilic syndrome? Hypereosinophilic syndrome is a super rare blood disorder.

Eosinophils are a type of white blood cell, and white blood cells are your immune system. Your immune system attacks any foreign substances.

A normal eosinophil blood counts is between 1-7%. My eosinophil was 200%.

There’s almost no literature about it, and according to the center of Genetic and Rare Diseases, ¾ of cases with hypereosinophilic syndrome still have unknown causes.

I was being treated at UCSF Benioff Children’s Hospital, one of the top pediatric hospitals in the nation, and they had no idea what to do. Again, that’s how rare it was.

They finally found out how to treat hypereosinophilic syndrome with Gleevec, a chemotherapy drug.

However, by the time my hypereosinophilic syndrome was cured my heart was damaged.

An immune system attacks. With so much of an immune system, they needed to attack something. So they attacked my heart.

The entire right side of my heart was damaged. I was transferred from UCSF to Stanford’s pediatric hospital. At Stanford, they bypassed the right side of my heart through a GLENN procedure. In other words, they manually rerouted the veins that were going to the right side of my heart to instead go directly to my lungs.

It was a successful procedure! But there was one catch: the surgery would wear off during my teenage years.

My Mom knew this, but she never told me about anything. Not about my hypereosinophilic syndrome, not about my chemotherapy drug, and not about my heart surgery.

She said, “It’s better to live in ignorance than in fear.”

A year and a half ago from today, I was driving back home with my Mom when she said, “Justin, you have chronic heart failure, and you need a heart transplant.”

That’s when she explained everything to me: about my hypereosinophilic syndrome, my chemotherapy drug, and my heart surgery.

See that image? That is the Lucile Packard Children’s Hospital. For the entire year of 2018 that became my life. And I hated it.

My life revolved around my heart failure. It’s amazing how exponentially downhill my life went.

When I ate food, I threw up. When I walked to school, I would have to endure pain every night. I couldn’t catch up in school. Last year, I was actually in Mrs. Richey’s Honor English class and I had to drop out.

It got to the point that I was picking out which online school to attend for my sophomore year of High School.

When I first applied for the heart transplant list, I was denied. That was soul crushing.

The second time I applied for the heart transplant list, I was accepted. As their lowest priority.

Here’s how the list goes:

  • 1A – Top Priority
  • 1B – Priority
  • 2 – Lowest Priority

I was a 2.

The doctors told me I was on the list for “a taste” of being on the list. There was no way I’d get a heart, because the last time someone as low priority as me got a heart was 4 years ago.

2 weeks later I got a heart.

After my heart transplant, I was in pain. I mean, like, a whole lotta pain.

But it was okay. I worked and worked on physical therapy everyday, and I got out of the hospital in 2 ½ weeks.

And I still couldn’t go home! I had to stay at a nearby housing facility for 3 months. The doctors said that in case of an emergency, I had to be near the hospital.

Do you wanna know what that housing facility is called?

The Ronald McDonald House. I know, haha, so funny, Ronald McDonald.

McDonalds has a charity where they make housing facilities near hospitals. Ronald McDonald Houses are set up, and families can stay there while their children are being treated.

At the Ronald McDonald House, I met so many people. There were people with heart surgery, brain surgery, lung transplants, kidney transplants, and bone marrow transplants.

The doctors told me that there was a 75% of me getting some form of rejection within the first 3 months post transplant. I am happy to report, that after 8 months post transplant, I have had 0% rejection.

If you want more details about my heart transplant, just go to myhearttransplantjournal.com

It’s my blog. I detailed my heart transplant through journal entries, and published it on there.A lot of people said that they cried while watching the first video.

Other than that, that’s my story. Back to you Amy.

February 5, 2019

So today was another Pink Dot Club meeting, and we did absolutely nothing.

Yes, that’s right, we did absolutely nothing.

Wait, Justin! Didn’t Maddy say that the schedule for the Pink Dot Club was tightly packed, so you were forced to combine your speech with Amy McCarthy?

Yes, imaginary voice in my head!

Maddy did in fact say the schedule for the Pink Dot Club was SO tightly packed that there was no room for Amy McCarthy and I to have our own separate speeches.

Maybe I’m holding onto my grudges too tightly, but I’m feeling a little salty. We. Did. Literally. Nothing.

The club officers came in and talked for five minutes, then the meeting was dismissed.

Oh yeah Maddy, the schedule is SO tightly packed. I can’t even imagine.

March 5, 2019

Today was another Pink Dot Club meeting. In case you didn’t know, the Pink Dot Club is the organ transplant club at school.

They announced a competition. Apparently if you do things to promote organ donation, then you get points. The club with more points wins.

I don’t know why, but thinking about the competition made me sad. No matter what Donate Life wants us to do, no one really cares.

Maddy wants our group to make posters, but a thousand people could pass our poster every day, and not even know it. Unless it actually touches them, no one will become an organ donor.