Tag: sad

April 28, 2018

~ Campjustin ~ 1 Comment

Shoot me. Please.

Everything is painful. What is this in my neck, an IV? That’s painful. What is this in my hand? It’s popping out of the skin like a bulge. I… what??? Actual STAPLES inside me. I use staples to turn in my homework, not seal up a big HOLE.

I feel like I’m going to die. My heart is thudding so loud it might pop out of my chest. What is this? I can’t hear anything because my heart is pounding so loud.

Why are there tubes inside of me? There’s actually tubes inside my chest. They’re sucking excess blood from inside my chest.

I’m so uncomfortable. I’m sweating all over. Why am I so hot? I can’t move and change a position since I’m so sore, which I don’t understand? Before I went into the surgery I could at least sit up.

There’s so much plastic inside me: the chest tubes, IVs, and monitors. There’s also a lot of stuff connected to me to. There’s also bruises on my hands and arms. There’s also a big pole with tons of machines onto it. I guess that’s where all the medications are.

They want to remove my breathing tube. Did I not mention there’s a tube inside my throat? Yeah there’s a tube inside my throat. They want to remove my breathing tube while I’m conscious. And they did. They just yanked it out like tug a rope. At least I can eat and drink now.

There’s also a catheter in my urethra. So… yeah.

I’m heavily drugged, so at least I’m happy about that. I mean they’re giving me pain medication which is great (even though I still feel awful).

Was transplant right for me? Was this a mistake?

I’m so stressed. Nothing prepared me for this.

April 30, 2018

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3rd day post transplant!

Oh I ate breakfast today! Which is great. Since my breathing tube is out, I have the ability to eat. The fact that I’m eating is telling me that my appetite is coming back.

Also, my grandma visited me today. It was nice seeing her.

The physical therapists came again today.

It’s so much pain. And so uncomfortable. There’s so much stuff inside me. These tubes… the hot and cold… the palpitations.

I don’t know how I’ll survive like this. I can’t survive like this. Even if it’s only for one week.

When will this stop?

Was transplant even right for me? This heart feels worse than my damaged heart. What if this was a mistake, and everything is screwed up for me?

I can’t help but feel so sad. Everyone in my grade is preparing for finals. I want to be preparing for finals. I want to study until 1 AM and stressed. I want to be at school. I want to be normal!

Why did I have to be the one to have this super rare disease! I can’t… why??? Why ME!

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.

July 2, 2018

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One of the benefits of staying at the Ronald McDonald House is you get to know a lot of people. Of course you don’t want to be at the hospital, but if you’re a patient staying at the Ronald McDonald House instead of the hospital then you can have fun. My most popular way to meet people is just sit in the community dining room and read. People will automatically come up to you if you look open.

People are surprised to know I’m the patient. They said I look so healthy, since I’m not in a wheelchair, have IV tubes sticking out, or extremely skinny. Someone even said they thought the patient was my grandma, and not me. That’s so good!

The people you meet and their stories are amazing. They’re inspirational but sad. A 10 year old girl has 10 open heart surgeries. A 14 year old girl with leukemia and went through different types of painful chemotherapy. A guy with a stem cell transplant that needs to stay at the Ronald McDonald House for 6 months (twice my required stay for heart transplant). A 10 month old girl with heart and brain damages. These are just a few.

When I was reading my book at the community dining room, I talked to Joe and another person at the same time. Joe is the dad of Nicole (see September 20, 2018), a girl who shortly came into the hospital after I left. This is Nicole’s 5th open heart surgery to replace her right artery. Her right artery was replaced with a mechanical one, and as she grows up her heart grows too, so the artery needs to be replaced. When she didn’t wake up, that was the sign that things were wrong.

I also talked to a nanny of a patient. That patient has been at Stanford last year for leukemia, and for the Fourth of July she was wheeled onto the Lucile Packard Children’s Hospital roof; from there she watched the fireworks. She’s been through many painful treatments, and now they’re trying a bone marrow transplant. Before she gets a bone marrow transplant, she needs to go through conditioning. Conditioning was supposed to be finished in November, but it’s now July. The nanny shaved off all her hair to support the patient.

The nanny also has health conditions. She has multiple strokes, so she needs to go through painful treatments to control them. When she went to a doctor in San Francisco, she had to bend over and they inserted a needle into her spine to place an IV. It wasn’t done well, so she had to bend over two times.

It’s a sad world inside the hospital.When you’re around so many sick people, you also become sad.

July 6, 2018

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I swam for the first time in seven years today!

I’ll start off with the swimming. I quit swimming when I was eight. I didn’t see the point in it since it only made me exhausted, and there were no results. I was swimming for 3 years, and I only managed to build up from 10 laps, 250 yards, to 12 laps, 300 yards. Swimming for me was exhausting. I wouldn’t even be halfway through a lap until my heart started pounding, my breathing would become desperate, my ears started ringing, and my vision would be blurry. That was my life.

It makes me sad that I couldn’t play sports like my classmates. If it wasn’t for my heart I would’ve advanced in swimming, maybe be on a team. Maybe I could’ve gotten a scholarship to college if it wasn’t for my heart. I could’ve played other sports too, like soccer or basketball.

After seven years of not swimming, I felt so much better in the water. The water soothed my joints and massaged my muscles. Immediately after transplant I was so sore that I couldn’t even stand.

I plan to start swimming as a sport. As I mentioned above, with my damaged heart I didn’t have the ability to play sports and therefore I was sad. After transplant I have a chance, and I’ll take it.

July 24, 2018

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Today is my doctor’s appointment, and tomorrow I’ll leave the Ronald McDonald house. July 27 is 3 months post transplant, but since I’ve been very healthy I get to leave early. I don’t know whether I’m happy or sad, but I know once I leave I’m officially “healthy”.

July 25, 2018

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Today I left Ronald McDonald house. It couldn’t be more bittersweet.

For one, the Ronald McDonald house was probably the happiest time of my life. I met a lot of people that I became friends with. They provided a network of support which is hard to leave. Everyday was also an adventure. I could walk across to the mall, get food from the common area, talk to people in the kitchen, or explore downtown Palo Alto.

On the other side, I’m glad to leave. I hate being in the hospital. Leaving means I’m healthy, and I want to be normal again. Even though I’ll have a hard time being “normal” again once school starts, I will be.

I’ll always remember my time at the Ronald McDonald house. I’ve met so many people that had amazing stories. I’ll always keep them in my mind.

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