Tag: ICU

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 1, 2018

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I pooped today. Which is great! I also sat in my room’s chair.

I’m not allowed to shower, so my hygiene isn’t that great. The nurse washed my hair with dry shampoo and water. Then the nurse wiped me down with sanitary wipes.

My chest tubes were removed today. The nurses first removed the tape, which they said was “the most annoying part since there’s a lot of them.” Removing the tape doesn’t hurt, but it does create anticipation. After the tape was removed, they yanked the tubes out. It shouldn’t be done slowly, because that creates way more pain.

They covered the holes with some gauze pads and tape.

May 2, 2018

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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

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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

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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 5, 2018

~ Campjustin ~ 1 Comment

A PICC Line was installed today.

A PICC Line is like a more permanent IV. They put it inside of me the same way they put in an IV: with a needle. However, my Mom and I had to wear caps and masks while they did it. The extra protection has something to do with preventing infection.

They took out the IV in my neck. Or was it a blood pressure monitor? Either way I’m glad it’s out. It’s not the most comfortable thing in the world.

They also replaced the gauze and tape covering my chest tube holes. It’s closing nicely.

A big thing: I transferred from ICU (Intensive Care Unit) to PCU (Patient Care Unit) today. The ICU is mainly where you stay if you’re in critical condition and need constant monitoring. The PCU is where you stay if you’re in better condition and have more privacy.

For me, the PCU is my transition phase between surgery and discharge from the hospital. I can’t wait to be discharged from the hospital (see May 15, 2018). Even though I won’t be going home immediately after, I still can’t wait to get discharged.

September 28, 2018

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Today was my doctor appointment. At 7 AM I woke up and got into the car. I slept on the whole ride to Stanford, except waking up to take my medicine.

I remembered to grab the cards we made at the Pink Dot Club meeting (see September 18, 2018). After putting on my mask, we went to my appointment.

After my echo, which is an ultrasound (the ones the doctors use to take pictures of babies in their womb) of the heart, we were told to wait outside. After a room was available, we quickly went inside.

The doctor examined me and told me the results were good. My Prograf levels were good, and they didn’t change anything. I talked to the doctors about my leg pain. Last year, I was hospitalized for extreme calf pain. After being discharged from the hospital, I had to be homeschooled for a month before I was able to walk around my school again. My mom expressed concern about it being from my hypereosinophilic syndrome, a blood disorder I contracted leading to my heart failure. The doctors told us to book an appointment with the doctor that deals with my hypereosinophilic syndrome (see October 16, 2018).

After the appointment, we delivered the cards. We went to the Cardiovascular ICU (Intensive Care Unit is where patients are admitted when they have a serious illness that needs constant monitoring) and delivered as many cards as we could. We also saw Jessica (pseudonym) and delivered her card. We couldn’t say hi because she was too busy with her VR game. Nicole’s room was empty.

The rest of the cards we donated to the Family Resource Center. The Family Resource Center is a department in the hospital that allows patients to rent games, movies, books, or is a place for families to relax or get work done. It’s where I rented the Mission Impossible series, Lord of the Rings trilogy, the Avengers series, the Captain America series, Matilda, Tom and Jerry, and other movies.

Later that day I had a swimming lesson at 4:30. I’m still a beginner at swimming, but I know I have the ability to get better. After transplant, I can even be on my High School’s swim team! After swimming, we met up with Joanna and Andrew (see June 16, 2018) for ramen.