May 12, 2018

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.

May 27, 2018

My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!

And can you blame me about complaining a lot? In 1 year I:

  • learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
  • learned that my heart was failing
  • my normal life was taken away
  • got my first IV
  • was considered for heart transplant
  • missed 1/2 my school year
  • In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
  • considered transplant by doctors
  • had 3 hospital stays in 3 months in a row
  • considered dropping out of school
  • was listed for transplant
  • got a transplant 2 weeks after listing
  • suffered recovery
  • still suffering recovery

All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.

Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.

Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.

May 28, 2018

The doctors told me the reason I can’t walk much is because I have weak lung power.

It’s NOT lung power. It’s endurance.

So what if I get short of breath when I start walking? Everyone gets short of breath when they start jogging. That’s what I’m comparing walking to: jogging. Right now, walking feels like jogging. Your heart beats louder, you get short of breath, and you want to stop. The only difference is my heart rate doesn’t increase.

Before transplant I felt the same thing while running that I’m feeling now while walking. Before transplant, when I ran, my heart beats louder, and I got SUPER short of breath. In fact, I got so out of breath and my heart beat so loud I had to stop. It’s the same thing now (well, actually it’s a milder version), only that now it’s walking. See? It’s about endurance. If I had more endurance I’d still be feeling short of breath, but only during exercise.

September 20, 2018

Nicole died today.

Nicole is a 10 year old girl battling heart failure and she’s been in the hospital since May. She was born with a non functioning right artery. As a result, she needed to replace her artery with a mechanical one. As she grows up, her heart grows too and she needs her artery replaced, thus this being her 5th open heart surgery.

In summary of her hospital stay, she didn’t wake up immediately from surgery. After she woke up, her kidneys started to fail, She had to be placed on dialysis. After that she had a stroke. The left side of her was completely paralyzed. As a last option, she was placed on the heart transplant list. She was monitored relentlessly by the doctors, but after her code blue today she didn’t make it. A code blue is an emergency situation announced in a hospital of a person in cardiac arrest.

Nicole’s dad owned multiple restaurant chains. At age 18, he built his own restaurant with his own hands. When Nicole asked him to be with her, he sold his restaurant chains and moved in to her city. Nicole’s sister suffered too. When she was offered to stay with her grandparents she said, “No. I want to be with Nicole.” Nicole was only 10, but she already had a boyfriend. He was the son of the pastor. Nicole was a devout Christian. Everyone in her town knew her, and her town’s church group stood in a circle for an hour praying to her. Tw days before today Nicole changed her name to Nicole Faith. The first thing her dad posted on FaceBook was “Nicole got her wings today”.

The worst my Mom and I thought Nicole would be is half crippled. We never expected her to pass. Next time at Stanford, Nicole won’t be in her room. She’ll be in a casket. In her room will be another patient.

You can help. 6,775 people die each day in the United States. If every one of them was an organ donor, Nicole would’ve been saved. Please register to become an organ donor. An inconvenience of a few clicks can save someone else’s life.

Follow the steps, and you can save another Nicole.

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 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 2, 2018

I contacted Amy. (see August 24, 2018). It relates to my first day of school (August 13, 2018) question: How do I transition back to being normal?

Hi Amy, I am the 10th grader with the heart transplant.

I just wanted to ask you a personal question. How did you transition back into normal life after getting out of the hospital?

No one understands what I’ve been through. After I tell my classmates, all I get is “cool story” or “Wow! I didn’t know that” or “that’s awesome”.

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!

Today, in the Pink Dot Club, we talked about a girl named Nicole who died waiting for a heart transplant. Except we talked about her for 1 minute. Only about half the club was listening. The next 20 minutes we talked about Honors English and the teacher for that class. Everyone was listening.

December 12, 2018

I think I’m losing hope.

My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.

Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.

I’m so sad.

Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.

The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?

Yet.. yet I can’t survive without it. That makes me sad.

I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?

I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!

And it’s not working!!!

Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.

Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.

I’m also nervous about starting the medication.

When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.

Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.

It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.

So what am I going to do about it?

In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.

For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.

The future of my body depends on these 4 months between today and March. I need to gain weight.

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.

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.