Tag: appetite

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 8, 2018

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Today I went outside for the first time since surgery.

At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.  

It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.

I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.

I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.

A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.

I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.

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 3, 2018

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There’s a farmers market in Palo Alto today. This farmer’s market is at California Avenue. My mom and I decided to go. We bought local grown strawberries, homemade chips, handmade linguine, and Mexican food.

I had to sit down in the farmer’s market because of my heart pounding. After my heart transplant, I’ve been experiencing a heavy thumping from my heart after physical activity. It physically tires me, and it makes me uncomfortable enough for me to not barely focus on anything else. Since my heart was pounding, I didn’t eat much of my Mexican food I bought.

June 16, 2018

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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.

June 23, 2018

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Dad visited me today. Julia, my sister, also came. We decided to eat ramen at Downtown Palo Alto. Despite the ramen being good, I couldn’t eat it all. In the car I drank an entire protein shake so I felt nauseous.

These are my daily requirements:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

I set these requirements for myself after transplant so I can recover faster. I need to drink protein shakes because my doctor recommended me to eat more protein. I have a tube inside of me that I used before my heart transplant. Through the tube I would insert nutrient shakes (Nutren 2.0). After my heart transplant, I have an appetite so I can eat my entire day’s calories. If I stop using my tube for 6 months, I can have it removed.

My Dad drove us to California Avenue. California Avenue is where the Palo Alto farmers market is held. My Mom and I went to that farmer’s market and it seemed pretty cool (see June 3, 2018). California Avenue also has a Caltrain station. Caltrain is a public transport train in Palo Alto.

After we explored California Avenue, we dropped off Julia at the Stanford Mall. The Stanford Mall is across the Ronald McDonald House. She wanted to buy clothes at Urban Outfitters.

My Dad and I went to a bookstore in Menlo Park. Menlo Park is a city right next to Palo Alto. The bookstore is Kepler’s Books. We also bought drinks from a nearby cafe, Cafe Borrone.

When we went back to the Ronald McDonald, we met with Julia. We both went to Downtown Mountain View for dinner. Mountain View is farther away from Palo Alto, but their downtown is nice. Mountain View is the headquarters for Google, so you see a lot of young employees in Downtown Mountain View. We ate at an Indian restaurant.

June 24, 2018

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I walked with my mom to downtown Palo Alto today. The Ronald McDonald House is a challenging (for me) yet reasonable distance from Downtown Palo Alto. Since I need to build my endurance, I always take a chance to walk to Downtown Palo Alto.

We ate New Orleans food at NOLA in Downtown. I loved NOLA’s atmosphere and their food was great.

June 26, 2018

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Today I watched the World Cup game Nigeria vs. Argentina. Argentina won. If I have to guess, I bet Argentina will win the 2018 World Cup.

Update: Lol, nevermind. France won.

I followed my strict regimen I developed:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

Following my regimen is important. It guarantees that once I get out of the Ronald McDonald house I’ll be able to have the capacity for normal activities (such as walking around school), it builds a basis for any sports I’ll want to play, and I can focus on eating enough food everyday.

A Make-A-Wish representative visited me today. Make-A-Wish is a non profit that provides “wishes” to children with critical illnesses. She asked me what I wanted for my wish. I don’t know.

I thought about putting solar panels on the roof of my house, but my Mom said that would be a waste of a wish. Then, on the spot, I got it! I would meet up with a chef to create multiple simple, healthy recipes I can eat. Throughout my life, I’ve had no appetite. I don’t eat enough everyday, so through my gastral tube I insert half of my calories. After transplant, I have an appetite so now I eat enough calories everyday. If I made recipes with a chef, it would help me eat normally.

The representative and my mom thought that’d be a great idea. They even said that I could format those recipes into a cookbook, and share it with other patients that have chronic illnesses. I’m really excited about this.

July 7, 2018

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My dad and Julia came to visit me today. Every Saturday my dad visits me at the Ronald McDonald House, and today he brought Julia, my sister. We went to Redwood City to watch Ant Man & the Wasp. Before the movie I bought a salad. I hate salad, but it’s one of my daily requirements:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

After we watched Ant Man & the Wasp we decided to drive along Seaport Blvd. We went to Seaport Blvd in Redwood City for Fourth of July (see July 4, 2018). My mom and I didn’t get to explore the boulevard that day, but it seemed pretty cool.

Seaport Blvd is a boulevard along the bay. It loops around, and in the loop are tons of office buildings. They have tons of areas to sit and watch the sea, which is pretty cool. We drove to a nearby private yacht dock to admire the scenery.

When we got back to the Ronald McDonald House we went across the street for dinner at the Stanford Mall. We ate at True Food Kitchen, a restaurant claiming to have “honest” food. The wait was terribly long, and the service was awfully slow.

July 10, 2018

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Today I had my physical therapy appointment.

After transplant, I had to do physical therapy everyday in the hospital. My physical therapy included stretches and walking around the hospital unit three times a day. Exercise was a LOT harder immediately after transplant than before transplant, but I knew that the more exercise I did, the faster I would be out of the hospital. So I walked around the hospital unit three times a day, and then four times a day. Then I walked around the entire hospital and played in their garden. My theory was right because I got out of the hospital about two and a half weeks.

If you remember my daily requirements:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

Exercising on the treadmill and walking 10,000 steps is part of my physical therapy, but everyday I also stretch with some stretches the physical therapists give me. Sometimes I swim, but I’ll do more of that once I get out of the Ronald McDonald House.

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