Yes! I’ve finally finished my videos for the UCSF videos (see November 15, 2018). Unfortunately, they’re 2 videos each about 12 minutes. The Pink Dot Club just posted that the UCSF videos can only be under 5 minutes. I’m hoping that UCSF will make an exception because:
They’re hearing from a relatable person who has been in their situation
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.
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.”
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.
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.
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.
Today the Pink Dot Club met after school to make quilts. It’s for the competition (see March 5, 2019).
While making quilts, Maddy pulled me aside. She was going to do a faux 73 Questions with Justin Wang.
It was awkward filming. She had me go around and act natural (walking around the house & eating cookies) while she asked questions. Someone also left their phone in the kitchen and it rang during the interview.
Maddy told me something really special. She said the sophomores (my classmates) who come to the club come to support me.
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