May 13, 2018

They told me I would leave the hospital today or tomorrow!

Finally! Staying in the hospital is horrible.

However, I wouldn’t leave to go home (which suacks). I would leave to the Ronald McDonald House. Yes, Ronald McDonald. Ronald McDonald of McDonald’s, the fast food chain.

McDonald’s has a charity that sets up housing near hospitals for families with their children in critical care. Hence, the Ronald McDonald House. There’s tons of them around the United States.

I am so glad I’m leaving. Every since day one of transplant, I’ve been dreaming of getting out of here. Pain is really, truly, honestly horrible. Is leaving the hospital going to get rid of my pain? Hopefully!

Today is also Mother’s Day. I’m gonna say my heart transplant was the biggest present for my Mom. When I was put on the transplant list, she had so much anxiety. She started taking pills. Thank God I was only on the list for 2 weeks!

Oky, so I’m not leaving today. I’ll leave tomorrow. That’s fine.

The doctor came in to talk to me about my staples. During rounds, I mentioned that before I left the hospital I want my staples taken out.

The doctor told me I would either have to wait until the next biopsy to take out my staples, or take them out now when I’m conscious.

I choose to take them out now.

They took a stapler remover, and used it on a human person. I’ll repeat, they used a STAPLER REMOVER. The staple removers you use to get out the staples in your homework packet, and used it on human flesh.

It was… painful.

What was surprising was no blood came out. The nurse gave me a hot pack to put over my chest.

Even though it was painful, I’m glad they took the staples out. I had a lot of anxiety over the staples because I was afraid that they would just pop out and my chest would just open.

Later in the day the nurses also took out my PICC line (see May 5, 2018). I think a PICC line is like an IV, but larger. Removing the tape made me really anxious, but it didn’t hurt to take out the PICC line. I hate my imagination.

The PICC line was at least a foot long! That was in me? That was in my veins? Oof.

Now all I have is my heart monitor. I ain’t got no tubes, poles, or even IVs. That’s awesome.

May 14, 2018

Well, I’m not leaving today either. They told me yesterday that I would leave today.

I took my Chinese final today. I take Chinese class, but I have to take the final before school ends, which is in one week.

It was hard taking the final because I take prednisone, a steroid. With prednisone, my hands constantly shake. I can barely write the characters.

The staples, IVs, and PICC lines are out (see May 13, 2018), so I really liked today. I went upstairs to the playroom to play on the 3DS. The hospital has a playroom, where patients can go and… play.

May 15, 2018

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 16, 2018

I went back home today.

Okay… so I’m not supposed to. Yeah, yeah, yeah, I know. The doctor’s specifically told me “Don’t go back home!” But I did anyways.

I’m not a rebel trying to break the rules or anything. I just want to go back home.

You read how miserable I was in the hospital. Now they want me to stay in a nearby housing facility for 3 months? No way.

When I was in the hospital in December, a doctor told me, “You heal faster at home.” He’s right. At home you’re more comfortable, so you automatically feel better.

After everything, I just want to find some comfort. I just want to snuggle in bed (although those hot & cold sensations might not allow) and watch some YouTube on my phone.

The reason I’m not supposed to go home is that in case of an emergency, I have to be close to the hospital. It’s been a day since I was discharged from the hospital, so maybe I should’ve waited a day or two. If there’s a time to have an emergency, it would be now.

ANYWAYS, I had no emergency today. At home, I snuggled and watched YouTube. I loved it. I don’t want to stay at the Ronald McDonald House, I want to stay at my house.

We went back to the Ronald McDonald House at night. My Mom took care of some stuff, and I grabbed some clothes.

May 18, 2018

So the school year is ending on June 1, exactly 2 weeks from today. I still have some homework to work on.

My teachers at school have been super nice. My school counselor contacted all my teachers, and they excused me from my semester finals. All my homework and classwork have been excused too.

I’m working on homework because I need extra credit. Remember when my English teacher visited me at the hospital (see May 6, 2018)? I did horribly in her class. I have a D in her class. Long story short, I had to switch to another English class. Now I’m doing homework for that English class.

I sat down at the Ronald McDonald House’s community dining area with a cup of tea and started to mark and annotate Romeo & Juliet. It was surprisingly hard. My hands keep shaking  that it takes me twice the effort to simply write. My hands keep shaking because I’m on a medication called Prednisone. I think Prednisone is a steroid.

May 19, 2018

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

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 23, 2018

Remember when my old English teacher visited me at the hospital (see May 6, 2018)? She was my Honors English teacher. Well, she failed me in her class. I think the reason is because I was gone for half the school year and I couldn’t keep up with her class. Also when I came back I didn’t have the energy to do my best on her projects.

Or maybe I’m just dumb.

A week before my heart transplant, I switched out of her class into Regular English. I thought I could make up my grade in her class, but I didn’t expect to be in the hospital again.

In the hospital I emailed my teacher about making up my grade. The school year is ending June 1st, which is under 2 weeks. I have to do my make up work fast.

I spent my entire day doing my English homework. I had to annotate every soliloquy in Romeo & Juliet, and write an essay. My work isn’t that great, but I think it’ll bring my grade up. I’m hoping to get a C.

Unrelated, at the same time I made some bread. I decided to make bread so I could share it with the Ronald McDonald House. Bread’s also convenient to make. I just make some dough, and let it do its thing for a couple of hours.

I don’t know if you remember, but back in the hospital I had a heart pounding sensation. Heart pounding was a major problem for me because it would give me unnecessary anxiety. I still have that feeling, but I’m trying to push my endurance. Cooking is a great way to that. I’m standing and doing physical activity with my fists. Great cardio.

#cooking, #english, #exercise, #heart-pounding, #ronald-mcdonald-house, #school

May 25, 2018

I woke up early today at 7 AM. Today’s my biopsy.

A biopsy is when a tiny machine travels through your veins and grabs a piece of your muscle tissue. I’m having a cardiac biopsy, which means they’re getting muscle tissue from my heart.

They put an IV in me, then injected me with medicine. I’m doing full anesthesia, which means I’ll be put fully to sleep during the procedure.

At my other biospies they can gradually reduce my anesthesia until I don’t use anesthesia anymore. The less anesthesia I use, the faster I can recover and get out of the hospital.

When I woke up, my thighs were orange and there was a band aid over my groin. I had to wait two hours before I could get up again. After those 2 hours, I was discharged from the hospital.

May 26, 2018

My Dad visited me for the first time at the Ronald McDonald House today. The Ronald McDonald house is a housing facility near the Lucile Packard Children’s Hospital. I have to stay here 3 months before I can go back home. Unfortunately, I can’t spend the day with him because Ray is visiting me today.

Ray is coming here today. I know this isn’t easy for him because Palo Alto is 40 minutes away from Pleasanton and this week at school is finals week.

Ray is great friend. He’s supported me when I missed tons of school. I texted him the day of my heart transplant (April 27, 2018). He wanted to visit me in the hospital, but I told him no because I was feeling awful (May 4, 2018). Now that I’m out of the hospital I’m better.

There’s a mall across the Ronald McDonald House. Today is my first day exploring that The Stanford Mall. The Stanford Mall is also an outdoor mall so I have to be careful and stay in the shade. After transplant, I’m more vulnerable to skin cancer.

Palo Alto is a rich city. Actually, any city in Silicon Valley is a rich city. I expect everything at the Stanford Mall to be super expensive considering: it’s in Palo Alto & it’s in Stanford. Turns out all of the prices were the same as my own hometown, Pleasanton.

My FitBit told me I walked 10,000 steps today. Woah.

In the hospital I could barely walk 10 feet without taking a break. The reason is my heart goes crazy whenever take a step. While walking and talking with Ray, I must’ve ignored my heart. That’s awesome!

I’m not even a month after my heart transplant, and I walked 10,000 steps!

When Ray left, my Dad and I went to Downtown Palo Alto to eat.

This is also my first time exploring Downtown Palo Alto. Downtown Palo Alto is a lot nicer than Downtown Pleasanton.

At Downtown Palo Alto I ate dinner with dad at ramen restaurant. Sushi used to be my favorite food, but I’m not allowed to eat raw food. Forever.

After eating, my heart pounding decided to show up. For a good 40 minutes after eating my heart was beating out of my chest. I didn’t want to stand up or walk. I hate my heart pounding.