April 28, 2018

April 28, 2018April 13, 2019 ~ 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 29, 2018

April 29, 2018January 12, 2019 ~ Campjustin ~ Leave a comment

I sat down for the first time today.

I’ve been in bed all day yesterday. Physical therapy wants me to be as active as possible. They held the tubes and lines so I could walk without anything in my way.

You can see the pain
I’m not actually sleeping

I was sweating so much that I’m glad to be off the bed. What I didn’t expect was how sore I was. I swear, I had the flexibility as the tin man.

My heart is horrible. My heart suffered at this tiny shred of exercise. When I was helped up, my heart was all THUD, THUD, THUD. It did not like this.

It was so painful getting up. My heart and soreness combined with my anxiety of tripping over the wires and having all the IVs pulled out of me was awful. Once I was on the chair, I was okay.

Turns out I sweat a lot on the chair too! As soon as I sat down, I immediately felt hot.

Well, at least I’m progressing fast. I got my breathing tube removed and I had my first physical therapy session today.

Skip to 00:15 to see the tube removed

April 30, 2018

April 30, 2018January 12, 2019 ~ Campjustin ~ Leave a comment

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 2, 2018

May 2, 2018January 12, 2019 ~ Campjustin ~ Leave a comment

Okay, so the chair is now where I mainly sit. I don’t want to lay on bed all day because of my hot and cold sensations. If I lay on the bed, I instantly become extremely hot and start sweating.

I have physical therapy every day now. Physical therapy makes me walk a loop around the ICU 3 times a day. It’s hard because my new heart is still adjusting to my body.

My heart pounding just goes crazy when I stand up. At least I don’t hear it always. Before every hour, minute, and second it would go THUMP THUMP THUMP.

When I walk, I have to wear a mask. I can’t get any infections right now. The mask makes breathing harder than it should be.

I don’t poop out much now. The doctors said I had to poop, so they got some guy to massage my butt so I could poop. It didn’t work.

May 3, 2018

May 3, 2018December 16, 2018 ~ Campjustin ~ Leave a comment

Yesterday I didn’t poop. They even had some guy massage my butt. Today they placed me on diuretics. I pooped.

My Dad also visited me today, so my Mom went home. We walked around the ICU. For physical therapy I’m supposed to walk a loop around the ICU 3 times a day.

My heart pounding goes crazy whenever I walk. The reason I’m doing physical therapy is to raise the bar for my endurance. Everyday I’m pushing my endurance levels so I can recover faster.

May 4, 2018

May 4, 2018April 13, 2019 ~ Campjustin ~ Leave a comment

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 9, 2018

May 9, 2018December 22, 2018 ~ Campjustin ~ Leave a comment

Today is my first biopsy.

A biopsy is a procedure where they take a small machine that goes through your veins, and takes a piece of your tissue. For me, it’ll take a piece of my heart tissue. That way, the doctors can test my rejection.

The nurses put some “happy juice” inside of me. I instantly got high. I actually like this feeling! Then I went to sleep.

When I woke up there was band-aid over my incision area. I felt nothing during the procedure. I think it only took 15 minutes. I was told not to move for 2 hours. I was feeling really sweaty by the time that 2 hours was up. The reason was because of my hot and cold sensations; I feel extremely hot when I lie down.

I’ve resorted to watching tons of movies.

Today I’m watching Lord of the Rings.

My hot and cold sensations are so uncomfortable that I can’t even sit comfortably. I always have to adjust myself so that I don’t get sweaty.

I also keep hearing my heart pounding. It’s always THUMP, THUMP, THUMP, all the time. Even when I’m doing nothing!

I also can’t get any sleep. None. I’m doing nothing all day yet I can’t get any sleep. That sucks.

May 12, 2018

May 12, 2018April 13, 2019 ~ Campjustin ~ Leave a comment

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 23, 2018

May 23, 2018January 12, 2019 ~ Campjustin ~ Leave a comment

Remember when my old English teacher visited me at the hospital (see May 6, 2018)? She was my Honors English teacher. Well, she failed me in her class. I think the reason is because I was gone for half the school year and I couldn’t keep up with her class. Also when I came back I didn’t have the energy to do my best on her projects.

Or maybe I’m just dumb.

A week before my heart transplant, I switched out of her class into Regular English. I thought I could make up my grade in her class, but I didn’t expect to be in the hospital again.

In the hospital I emailed my teacher about making up my grade. The school year is ending June 1st, which is under 2 weeks. I have to do my make up work fast.

I spent my entire day doing my English homework. I had to annotate every soliloquy in Romeo & Juliet, and write an essay. My work isn’t that great, but I think it’ll bring my grade up. I’m hoping to get a C.

Unrelated, at the same time I made some bread. I decided to make bread so I could share it with the Ronald McDonald House. Bread’s also convenient to make. I just make some dough, and let it do its thing for a couple of hours.

I don’t know if you remember, but back in the hospital I had a heart pounding sensation. Heart pounding was a major problem for me because it would give me unnecessary anxiety. I still have that feeling, but I’m trying to push my endurance. Cooking is a great way to that. I’m standing and doing physical activity with my fists. Great cardio.

#cooking, #english, #exercise, #heart-pounding, #ronald-mcdonald-house, #school

May 26, 2018

May 26, 2018January 12, 2019 ~ Campjustin ~ 1 Comment

My Dad visited me for the first time at the Ronald McDonald House today. The Ronald McDonald house is a housing facility near the Lucile Packard Children’s Hospital. I have to stay here 3 months before I can go back home. Unfortunately, I can’t spend the day with him because Ray is visiting me today.

Ray is coming here today. I know this isn’t easy for him because Palo Alto is 40 minutes away from Pleasanton and this week at school is finals week.

Ray is great friend. He’s supported me when I missed tons of school. I texted him the day of my heart transplant (April 27, 2018). He wanted to visit me in the hospital, but I told him no because I was feeling awful (May 4, 2018). Now that I’m out of the hospital I’m better.

There’s a mall across the Ronald McDonald House. Today is my first day exploring that The Stanford Mall. The Stanford Mall is also an outdoor mall so I have to be careful and stay in the shade. After transplant, I’m more vulnerable to skin cancer.

Palo Alto is a rich city. Actually, any city in Silicon Valley is a rich city. I expect everything at the Stanford Mall to be super expensive considering: it’s in Palo Alto & it’s in Stanford. Turns out all of the prices were the same as my own hometown, Pleasanton.

My FitBit told me I walked 10,000 steps today. Woah.

In the hospital I could barely walk 10 feet without taking a break. The reason is my heart goes crazy whenever take a step. While walking and talking with Ray, I must’ve ignored my heart. That’s awesome!

I’m not even a month after my heart transplant, and I walked 10,000 steps!

When Ray left, my Dad and I went to Downtown Palo Alto to eat.

This is also my first time exploring Downtown Palo Alto. Downtown Palo Alto is a lot nicer than Downtown Pleasanton.

At Downtown Palo Alto I ate dinner with dad at ramen restaurant. Sushi used to be my favorite food, but I’m not allowed to eat raw food. Forever.

After eating, my heart pounding decided to show up. For a good 40 minutes after eating my heart was beating out of my chest. I didn’t want to stand up or walk. I hate my heart pounding.