Tag: other patients

May 15, 2018

~ Campjustin ~ 1 Comment

I’m leaving the hospital Finally!

First, I took a shower, and the water washed off most of my dried blood.

It was nice leaving that torturous place. I went directly to the Ronald McDonald House after getting out of the hospital.

The guy at the reception desk gave me a tour of the House. There’s a community kitchen, but we have our own individual pantry and refrigerator section. There’s also a community pantry, refrigerator, and freezer. The Ronald McDonald House has several playrooms, a gym, a backyard playground, and a community dining room. The Ronald McDonald House also has a shuttle between them and the hospital.

My room was nice. It had 2 beds, and a bathroom. I can’t help but think it’s not that great for long stay housing. It’s more like a hotel room than anything.

The Ronald McDonald House was serving dinner downstairs today. This usually happens. Nonprofits usually come to the Ronald McDonald House and make dinner for families that stay here.

I ate outside. I was sitting next to a family, and I overheard their conversation. Their son was 5 years old, but had 3 heart transplants!

3??? I can barely survive this one. I left and decided to eat inside. That story made me sad.

While I was eating dinner, my heart suddenly started pounding. I instantly got mad. I’m angry with the world.

I told my Mom, “I hate this place.” I want to go home, not stay in a hotel for 3 months!

My Mom told me not to be angry. I’m lucky I got my heart in the first place. I only waited for 2 weeks, not 6 years.

I can’t be happy about this situation. I mean, this is what I’ve been working for??? To stay in a hotel room for 3 months???

May 19, 2018

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I went to the hospital prom today.

The hospital prom is more of a “get together”. It’s way more PG than a High School prom.

The hospital school hosts the hospital prom. I’ve been going to the hospital school for the past month to do all my school make up work. They invited me, so might as well go.

The hospital prom was good. I can’t believe the 4 teachers from the hospital school organized this.

The outside of the cafeteria was decorated to create a jungle theme. We were given goodie bags when we entered and we used a sharpie to write our names in them. Inside the goodie bags were little toys.

There were snacks: sandwiches, chips, skewered chicken, jello, popcorn, and salad. There were also a lot of games: hoop toss, miniature basketball, the price is right, and many more. There was a DJ inside and a ukulele band inside.

They had a mini casino. There was blackjack, roulette, and poker. We had no idea how to play so we just watched.

The doctors also introduced me to another person from Pleasanton: an 8th grader who also had a heart transplant.

May 22, 2018

~ Campjustin ~ 1 Comment

I had my first psychology appointment today.

At the hospital, I was miserable and pretty sad, so I was looking forward to my psychology appointment.

I’m required to go to psychology because they think as a teenager I’ll screw up. Turns out a lot of teenagers die after transplant because they refused to take their medications. That’s dumbbbb.

I mean, really? I know you need to fit in, but I wouldn’t risk death. Your life depends on this medication.

For my first psychology appointment I was asked to make a timeline of my life, then write down my goals for 10 years from now.

Okay, when I was 2 I was rushed to the hospital because I was vomiting. It took 2 weeks for the doctors to diagnose me with hypereosinophilic syndrome. My heart was damaged so I needed my first open heart surgery. Then April 10, 2018, I was put on the heart transplant list. On April 27, 2018, I had my heart transplant.

My goals In 10 years: running triathlons, graduated from University, and living with my partner (whoever they are). Oh yeah and a nice job that pays me a 6 digit salary. That’s the good life.

We then talked about adjusting back to “normality”. If someone asks me, “Where were you during the school year?” I’ll just answer “I had some business to take care of.” If they keep pressuring me, then I’ll say “I was visiting my family in China.”

I don’t want to be weird. I don’t know how people would react if I said if I was in the hospital.

I think it’ll be hard for me to go back to school and pretend none of this ever happened. I don’t think I can go back to my old mindset where all I worried about was my grades. I guess what my Mom said was right, “It’s better to live in ignorance than in fear.”

May 27, 2018

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My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!

And can you blame me about complaining a lot? In 1 year I:

  • learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
  • learned that my heart was failing
  • my normal life was taken away
  • got my first IV
  • was considered for heart transplant
  • missed 1/2 my school year
  • In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
  • considered transplant by doctors
  • had 3 hospital stays in 3 months in a row
  • considered dropping out of school
  • was listed for transplant
  • got a transplant 2 weeks after listing
  • suffered recovery
  • still suffering recovery

All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.

Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.

Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.

June 10, 2018

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My church family visited me. Since today is Sunday, they came after church ended. I’m not radically Christian, but after all that has happened, I do believe miracles happened (see June 13, 2018). My church family was really supportive of my heart transplant.

I also met Joe today. Joe is the father of Nicole. Camp Taylor posted about Nicole (see June 5, 2018). Nicole is in the hospital after complications after her 5th open heart surgery (see September 20, 2018).

Joe is a chef. He had a fast casual teriyaki restaurant chain in Southern California. He built his first restaurant by hand at 18. When Nicole asked her dad to be with him, he sold his restaurant chain to have more time with his daughter. Being in the hospital is a challenge, so you need to have as much support as possible.

Joe and Nicole have place their faith on God. They’re both radical believers. Although Nicole is 8, she has a boyfriend: her pastor’s son. Nicole is loved by God, and she is supported by her church family. When Nicole was in the hospital, her church family went in a circle prayed for her.

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.

June 13, 2018

~ Campjustin ~ 1 Comment

My church family visited me again at the Ronald McDonald House today. I go to a Chinese church, so they’re all Chinese. They brought porridge, eggs, and pastries.

I stopped going to church when I was in elementary school. I didn’t believe in God. However, last year I really needed help. My grandma prayed to God for my heart transplant. When my doctors said it was unlikely for me to get a heart, I really believed them. However I got a call two weeks later. That is a miracle by God. After surgery, I was in so much pain. It was unbearable and I felt sad. I asked the hospital preacher to pray for me. I’m not radically Christian, but I do believe God is watching over me.

My Mom took her church family to explore around the Ronald McDonald House’s surrounding area. Next to the house is a very expensive senior housing. Across the house is the Stanford Mall. Downtown Palo Alto is also a longer but walkable distance from the Ronald McDonald House.

One of the church members taught Angela and me how to cook Taiwanese chicken broth. Angela is my friend at the Ronald McDonald House. Angela’s mom really liked the recipe, although Angela may not be able to eat a lot of it. Angela can only eat a maximum of 20 grams of protein per day.

June 15, 2018

~ Campjustin ~ 2 Comments

I like to cook at the Ronald McDonald House. It’s a good way to get some activity into my day and meet/talk to new people. However, since I experience heart pounding cooking is difficult.

After transplant, I have a sensation of heart pounding. It’s when I can do as little as walking across a room and my heart starts pounding. I can feel it in my chest and I feel thumping in my ears. It’s not as bad as when I was in the hospital, but it still inhibits the amount of activity I do. That’s why I want to push my activity levels every day. If I do more activity, I raise my endurance levels. That’s why I walk on the treadmill everyday and cook often.

I’m planning to cook mushroom cups with Angela. I got the recipe online. Angela is my friend I made at the Ronald McDonald House. She’s at Stanford for treatment of her liver. She can only eat 20 grams of protein per day. 20 grams of protein is nothing. An egg has 6 grams of protein, so she can only eat under 4 eggs each day.

My mom took me to Safeway for ingredients of the mushroom cups. Mushroom cups are cooked mushrooms in a cream cheese mixture stuffed into filo cups. I bought mushrooms, heavy whipping cream, and filo cups. When I came back, I cooked the filling with Angela. We diced the mushrooms and cooked it with the whipping cream. After the mixture was thickened, we saran wrapped it and stored it in my room’s refrigerator overnight.

June 16, 2018

~ Campjustin ~ 1 Comment

My Mom’s friend, Joanna, visited me at the Ronald McDonald House today. Joanna was my piano teacher, and I’m friends with her son, Andrew. We went to eat at Calafia Cafe & Market A Go-Go. We went there because I saw that restaurant on a TV show called Diners, Drive-Ins, and Dives.

Update: Calafia Cafe & Market A Go-Go is permanently closed.

When Joanna and Andrew left, I made mushroom cups with Angela. We followed a recipe online. Angela is my friend at the Ronald McDonald House (see June 15, 2018 for her condition). I already made the filling for the mushroom cups yesterday, so I brought it out from our community refrigerator. I put the premade filling into the filo cups and baked it in the oven.

Angela’s family had a BBQ today. I joined in their barbeque and they liked my mushroom cups. I met Angela’s sister and her English teacher. I had a great time with them!

After the barbecue my Dad visited me at the Ronald McDonald House. Dad brought Julia, my sister, too. This is the first time after transplant that I’ve seen Julia. The reason is because UCLA doesn’t start summer break until June 10.

We went across the street to the Stanford Mall to eat dinner. We ate at Tender Greens, a restaurant that serves salad. I couldn’t eat so much since I had to walk to the Stanford Mall. Although it’s across the street from the Ronald McDonald House, that distance is enough to make my heart start pounding. When I do activity, my heart starts pounding. I can feel the thumping in my chest and ears. When heart pounding happens, I’m usually too uncomfortable or nauseous to eat.

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