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.
Amy (see August 24, 2018) was my substitute teacher for English today. When I walked into my classroom, I was really shocked to see her sitting at the teacher’s desk. I waved to her and she responded with a smile and a wave.
Later in the class we talked about transitions back into life. I really wanted to know, how did I become “normal” again? She told me I have a new perspective. What I do with that perspective is up to me. Amy said she understands if I don’t want to be completely honest about my transplant. Before she left for lunch I asked for her email. That way I have someone to talk to.
At lunch was my journalism club meeting. I decided to do an article about Amy. The idea was a hit among them, because a kidney transplant is not something that happens everyday. Maybe another meeting I can tell them about mine.
I met Amy McCarthy at the school library today. Amy McCarthy is the library substitute I met at my High School’s club fair (see August 24, 2018). She had a kidney transplant when she was 40.
Today I have a dental appointment. My last dental appointment was February 2018 because I’m not allowed to have a dental appointment until 6 months after transplant. The dentist told me I should brush more. If there’s plaque on my teeth, the bacteria can get in my bloodstream and potentially damage my heart. Now instead of brushing 2 times a day, I’ll brush 3 times a day. It’s a small price to pay compared to the alternative.
Today I couldn’t swim outside. The smoke from the fire is still polluting Pleasanton, so I had exercise inside. I instead exercised on the treadmill:
20 minutes walking on 3.0 speed
20 minutes running in intervals on 4.0 speed
1 minute runs with 20 second rests
I used the exercise technique my swim coach taught me (see November 8, 2018). Exercising in intervals is a great way to build up my endurance. My main focus with exercise right now is endurance instead of speed.
I walked for 20 minutes, and ran for a total of 15 minutes.
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 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.