I know a lot of people don’t have time to read tons and tons of journal entries, so this summarizes my post-transplant recovery. Check it out if you want! 😄
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Tag: movies
May 7, 2018
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 11, 2018
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
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
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 17, 2018
Today Angela and I watched The Incredibles.
Angela is my friend at the Ronald McDonald House (see June 15, 2018 for her condition).
The Incredibles is a movie released in 2002, and the sequel will be shown at the Ronald McDonald House on Thursday (see June 21, 2018). Since Angela hasn’t seen The Incredibles before, we watched it today because we want to come into The Incredibles 2 prepared.
June 17, 2018
Cosplayers came to the Ronald McDonald House. There were a lot of Star Wars characters. It’s embarrassing, but I’ve never bothered to see Star Wars until I was in the hospital. Since I had time to waste, I watched episodes 1-6.
There was Darth Vader, Princess Leia, Obi-Wan Kenobi, a Stormtrooper, and others I forgot. My Mom loves Star Wars.
Miss California Latina was also here today. She gave me a signed copy of her headshot, which was cool.
June 20, 2018
I had a biopsy today. A biopsy is when they take a sample of your muscle tissue. For me, I’m having a cardiac biopsy, which means they’re taking a sample of my heart’s tissue.
We went in for the biopsy at 11 AM, however the biopsy was delayed until 1 PM. Then the biopsy was delayed to 3 PM. It was okay; I watched some movies while waiting. Someone also came in and gave me a $15 Apple gift card for waiting.
This biopsy I wasn’t put on much anesthesia, so I could recover faster. I went in and out of consciousness during the procedure, but I was high so that’s okay. I love being high. When I was in consciousness, all I felt was pressure: no pain.
I left the hospital at 5 PM. The procedure was very short, but recovery takes a majority of the time. That’s why I left so late.
June 21, 2018
Today Pixar came to the Ronald McDonald House. They’re showing The Incredibles 2 in the activity room. I watched The Incredibles 2 with Angela and Noah. Angela and I watched The Incredibles on Sunday to be prepared for the sequel (see June 17, 2018). Noah is my friend being treated for stomach cancer.
Angela had to leave halfway through the movie for her therapy, so it was just me an Noah. The activity director gave us a pixar bag with a pixar hat inside. After the movie, I waited in line to get a picture drawn by Pixar artists. I choose to get a drawing of Remy from Ratatouille.
Tony Maki – Story Artist
Paul Topulos – Digital Art/Painter
June 28, 2018
Julia, my sister, came to visit me today. We decided to watch a movie at the Stanford theater. The Stanford theater is a movie theater at Downtown Palo Alto that shows classic movies from the Golden Age of Hollywood.
We also asked Noah and his family to come with us. Noah is a 10-year-old boy also at the Ronald McDonald house. He has stomach cancer and is being treated with an experimental drug. Noah was pretty tired and his dad stayed with him, so his mom came.
Downtown Palo Alto is a reasonable distance from the Ronald McDonald House. Since I do need exercise everyday, it’s good that I’m walking. However, a patient without energy might not be able to walk the distance. Now that my heart pounding is less noticeable, it’s much easier for me.
At Downtown Palo Alto we ate at Lemonade, a health food restaurant. My sister also eats at lemonade at LA, so she likes the food there.
We watched Christmas in July. Christmas in July is about a guy being tricked by his co workers of winning a slogan contest. However, the owner of the company gives him the prize, without realizing he’s not the actual winner. When Christmas in July ended, we stayed for another move, The Gay Divorcee. The Gay Divorcee is about a women desperately trying to get a divorce, and she fakes cheating. Halfway through I got lost because there was so much singing and dancing and black and white.
My dad picked Julia from the movie theater. Otherwise, Julia would’ve had to stay the night with us at the Ronald McDonald House.
Noah’s mom liked the movies. She said it was nice that there’s so much fun stuff to do at Stanford.