Tag: distractions

May 4, 2018

~ 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 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

~ 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 11, 2018

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I love the outdoors. Since I went out to the ICU’s patio (see May 8, 2018), I’ve loved the fresh air and warm temperature.

I don’t like being inside the hospital. Inside my room it’s so dark, cramped, and smelly. Outside, it’s so nice. I don’t even have to wear my mask outside.

Everyday I need physical therapy. Today I walked outside into the hospital’s garden for exercise. It was hard, but at least I was having fun.

I asked my doctors when I could be discharged, but they said not yet 🙁

In the hospital an hour is a day, a day is a month, and a month is a year. In real life, you want more time. In the hospital, you want time to speed up. Distraction are keys to speed up time.

Movies are now my choice of distraction. I’ve already finished watching the Lord of the Rings trilogy. When the Family Resource Center opens, I’m going to rent out the Mission Impossible series.

May 12, 2018

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I watched Mission Impossible all day. I found that watching movies is a great way to distract from the pain.

At the Lucile Packard Stanford Children’s Hospital there’s a Family Resource Center, where you can rent movies and DVD players. I rented so many movies: The Lord of the Rings trilogy, The Captain America series, The Avengers series, Matilda, and Tom & Jerry. Now I’m moving onto the Mission Impossible series.

For my physical therapy, I walked downstairs to the cafeteria. I bought food at the cafeteria, and ate food outstairs. I can’t eat inside because I’m required to wear a mask in the hospital at all times. I don’t want to go back to my gloomy room and eat. I ate outside, but I’m not supposed to be outside, so I had to find creative ways to sit in the shade.

  • I’m watching Mission: Impossible Ghost Protocol

June 4, 2018

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I watched a movie with my Mom today. We went to Redwood City Downtown to watch Avengers: Infinity War. When I was shortly out of my transplant surgery I was so uncomfortable. To ignore the pain I watched a lot of movie series. One of the movie series I watched was The Avengers.

Avengers: Infinity War is the 3rd movie in the Avengers series. I was so shocked about the ending. Since I watched a lot of Marvel movies, I expected the heroes to always be fine in the end.

After the movie my Mom and I ate at the Old Spaghetti Factory. The Old Spaghetti Factory is a restaurant next to the movie theater. However, since my heart was pounding I couldn’t eat much spaghetti. After my heart transplant, I’ve been experiencing my heart pounding after physical activity. It makes me so uncomfortable I can’t focus on something, not even eating.

That’s not good since I have a tube inside of me. The tube was used to put extra calories and nutrients inside me, but now I’m trying to survive without the tube. If I can’t eat, then this is an impossible mission.

Before transplant, I tried to get off the tube. However, it was really REALLY bad timing. At the time I tried to get off the tube was when I had protein losing enteropathy. My heart started to fail, so other parts of my body were affected. Protein losing enteropathy is when protein is lost by the body. Since I wasn’t getting extra protein, I started to become skinnier and my weight dropped. I needed to get back onto tube feeding.

June 11, 2018

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Angela and I made chocolate chip cookies today. Angela is my friend at the Ronald McDonald House. Cooking is a good way for me to push my endurance. We both made chocolate chip cookies, but there were extra chocolate chips so Angela’s mom made some modified cookies. After our chocolate chip cookies were done baking, we shared it with the other families at the Ronald McDonald House.

Joe made lobster rolls today. Joe’s daughter, Nicole, is in the hospital after her 5th open heart surgery had complications (see September 20, 2018). As a result, her family has to stay at the Ronald McDonald House while she’s being treated.

I helped him make them. After the lobster was done cooking, he tasted them, and found out they went bad. Joe had to drive back to the store to buy shrimp for the rolls instead. It was fun making food with Joe.

July 13, 2018

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There was a music festival today at Downtown Redwood City. My sister and dad also decided to visit me today. We went to the music festival, and it was really fun. There was a lot of people and sun, so I tried to sit in a shaded non crowded area. After transplant. I’m supposed to stay out of the sun since I’m more susceptible to skin cancer. I’m also supposed to stay out of crowded spaces in case of infection.

Downtown Redwood City is about a 5-10 minute drive from the Ronald McDonald House. I usually go to Downtown Redwood City because they have a movie theater. After the music festival we watched a movie called Skyscraper. Skyscraper had amazing graphic visuals that almost made up for the plot.

July 18, 2018

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Every Wednesday at the Ronald McDonald house there’s a movie night. Usually no one goes (I don’t know why?), but I invited my neighbor, Kayano, and his family to come. I also invited Johanna (pseudonym) and her mother Tanjila (pseudonym) to watch the movie with us.

Tanjila is a really sweet person. She was nervous about bringing Johanna to Stanford, since they live far away. She said I made them less nervous, which I felt great about. Johanna needs a lung transplant, but she’ll need to be on an oxygen machine in the meantime.

We watched Trolls. Trolls is a movie about trolls. It’s so bad it’s hilarious. I loved laughing at the awkward moments.

If you’re at the Ronald McDonald house or the hospital, you’re most likely in pain. I suggest finding something to occupy your time to distract from the pain.

At the Ronald McDonald House there’s tons of activities for you to enjoy, such as bingo night, arts & crafts, or movie night. My personal favorite is sitting at the kitchen and reading a book. People are more open to talk to you if you make yourself seem available. The Stanford Mall is across the street, and Downtown Palo Alto and Safeway are walking distance away. Safeway has a food bar, and Downtown Menlo Park is not far from Safeway. If you can make it to Downtown Palo Alto or Downtown Menlo Park, you can hop on a CalTrain and travel to neighboring cities.

At the hospital, check out the Family Resource Center. I rented so many movies at the Family Resource Center that I finished the Captain America, Mission Impossible, Lord of the Rings, and Avengers series. The hospital also has a great garden to explore, and each unit has a balcony so you can have fresh air. I remember my room had so much stenk that outside smelled like heaven. Stanford has playrooms for you to enjoy. The playrooms include games, and there are other people at the playrooms you can play with.

July 26, 2018

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It’s weird being back at home. Being at the hospital sucked, but somehow I have nostalgia about it.

For one, I have my own room. I’m glad to have my own place to sleep and scroll through my room. Secondly, there’s no people around. At the Ronald McDonald House there were always people around in the kitchen or TV room. Thirdly, I have nothing to do. Unlike the Ronald McDonald House, Pleasanton’s downtown or mall isn’t walking distance away. Instead I just play games on my phone or watch The Office.

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