Tag: hot and cold

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 29, 2018

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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

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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 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 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 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 9, 2018

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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

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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.

June 9, 2018

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My Dad visited me today. This is the second time he’s visited. The last time he visited I spent the day with Ray instead of him (see May 26, 2018).

My heart pounding is still limiting me from doing any activity. I hate my heart pounding. One step and I instantly feel my heart beating in my ear. It feels so uncomfortable, and it makes me nauseous and physically tired.

My Dad knew this, so he asked me if I wanted to explore. He drove me along El Camino Real. El Camino Real is a long road that cuts through many cities, including Palo Alto. You can drive from San Francisco to Mountain View along El Camino Real.

From Palo Alto, we went north on El Camino Real. We passed through Menlo Park, Atherton, Redwood City, San Carlos, Belmont, San Mateo, and Burlingame. We drove through San Carlos Downtown, Belmont Downtown, and San Mateo Downtown.

In the car, I had to adjust myself every minute. It’s gotten better ever since I’ve been out of the hospital. What is?

I call it a hot & cold sensation. My body temperature adjusts rapidly due to my new heart. If I lay my back on a chair and cover myself with a blanket I immediately feel so hot I start sweating. If I sit up and take off my blanket I get so cold I start shivering. A nurse told me it was because my heart was pumping regularly, and my blood cells had normal circulation. My body had to learn how to control body heat.

When we returned to Palo Alto and I got my medication my Dad drove south to Mountain View. We ate dinner at a restaurant in Mountain View called Little Sheep Mongolian Hot Pot.