Tag: anger

May 4, 2018

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I have so much pain. The doctors lied to me. They said that I would have tons of energy after transplant. That’s a lie. I feel horrible. There’s pain everyday. There’s pain always.

Is my heart okay? Was a transplant right for me? This heart works worse than my damaged heart. What if all this pain was for nothing?

This heart is always pounding. Every second I’m awake I can feel and hear it. It’s always THUD, THUD, THUD.

I have anxiety because of the heart transplant. I have never had anxiety as bad as this before transplant. What if this heart stops pounding? My staples feel like they’re going to pop and my chest is going to open up.

I HATE THIS POLE. Why is there such a big pole next to me! There’s tons of cords coming from my body. I always get myself tangled. There’s more plastic in me than the Pacific Ocean.

Why the hot and cold sensations? One moment I’m hot, the next moment I’m cold. I can’t sleep because of this (and also the pain). I lie down and in minutes I start sweating. I sit up and I’m instantly freezing.

Physical therapy is the worst. They want me to walk around the unit three times a day. I can barely sit, not even walk. When I walk I have to constantly take breaks. I also have to concentrate to not trip and fall over my lines connected to my IVs, which sucks.

I try to distract myself from the horribleness of this situation by watching TV. Nothing can distract myself from the pain. It’s always nagging and tugging at me. Like, why?

I’m so sad. I can’t explain how sad I am. Everything seems hopeless. This heart transplant was supposed to be my treatment, but it’s not working. All it’s brought was pain.

May 6, 2018

~ Campjustin ~ 2 Comments

My English teacher visited me today. She’s my Honors English teacher. To be clear, she’s the English teacher that failed me.

So when I was picking classes in 8th grade I picked Honors English because honors (I wanted to be smart alright). I had NO idea I would’ve been in and out of the hospital for my entire Freshman year at High School. I was set back in her class, and she gave me a D. What kind of English teacher fails their student then visits them at the hospital?

She gave me cards that my class made for me. If I’m going to be honest, I don’t care about the cards at all. I know that the class just made it in fake kindness. They’ll feel bad for a moment, do their “kind” part, then move on.

Sorry, maybe I shouldn’t say that. I’m just so angry! I’m in all this pain everyday. I… I’m struggling to keep my sanity intact.

Maybe I don’t even deserve the cards. What have I done? Complain all day thinking the world was about me? What was I expecting?

Reality is harsh. Out of the 50 million people that could’ve had hypereosinophilia, it was ME. What awesome luck.

If it wasn’t because of that I could’ve had a way better life. I could’ve been a soccer player, been way taller than 5’3”, not had any blood draws in my entire life, and been normal. I COULD’VE BEEN AN ATHLETE!

Oh my god what are these fluctuating emotions.

May 7, 2018

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They told me if I take this sleeping medication I would fall asleep. It’s 2 AM.

I should be happy with my heart transplant. Not everyone even gets this chance. But I’m not happy.

I want to end my pain. I did not expect this pain. At all.

I can’t sleep because I’m extremely hot. So hot I’m sweating.

I’m experiencing a hot and cold sensation. My circulation is crazy because of my new heart. When I lie down, I feel like I just entered the sauna. Then the heat just keeps on increasing until it’s unbearable. When I pull my blankets off me, I get super cold. It’s like I traveled from the sauna to an 5 AM freezing outdoor swimming pool.

Sitting up isn’t an easy task. I have to squeeze a pillow around my incision area, and do a crunch. Especially being so sore, it takes a lot of effort.

Even when I do catch a break with sleep, I keep getting woken up from the machines beeping, the nurse checking blood pressure, sudden need to use the restroom, and most often the unbearable heat.

At least when the sun is up I have things to do. I can eat, watch movies, talk to my Mom. and… well that’s it. I’m in too much pain to do any homework or work on anything else. I don’t have any video games to play, and the video games in my room are broken. But at least I have something to do!

In the hospital, time is against you. An hour is a day, a day is a month, and a month is a year. If I could somehow speed up time, I would.

At night I usually just stare into the darkness and think. I’ve been having a lot of dark thoughts from all the pain. I’m not suicidal, but I just want the pain to end.

Why me? Why did I have to get this heart transplant? Why did I have to get a heart transplant in the first place?

Was a heart transplant the right choice? I don’t think it is. My new heart is way worse than my old heart. What if I stay this way forever? Then what will happen? I can’t live like this.

May 16, 2018

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I went back home today.

Okay… so I’m not supposed to. Yeah, yeah, yeah, I know. The doctor’s specifically told me “Don’t go back home!” But I did anyways.

I’m not a rebel trying to break the rules or anything. I just want to go back home.

You read how miserable I was in the hospital. Now they want me to stay in a nearby housing facility for 3 months? No way.

When I was in the hospital in December, a doctor told me, “You heal faster at home.” He’s right. At home you’re more comfortable, so you automatically feel better.

After everything, I just want to find some comfort. I just want to snuggle in bed (although those hot & cold sensations might not allow) and watch some YouTube on my phone.

The reason I’m not supposed to go home is that in case of an emergency, I have to be close to the hospital. It’s been a day since I was discharged from the hospital, so maybe I should’ve waited a day or two. If there’s a time to have an emergency, it would be now.

ANYWAYS, I had no emergency today. At home, I snuggled and watched YouTube. I loved it. I don’t want to stay at the Ronald McDonald House, I want to stay at my house.

We went back to the Ronald McDonald House at night. My Mom took care of some stuff, and I grabbed some clothes.

May 28, 2018

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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.

October 2, 2018

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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?

December 12, 2018

~ Campjustin ~ 2 Comments

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

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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

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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.