June 15, 2018

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 24, 2018

Today there’s a Stanford run for kids. The Lucile Packard Children’s Hospital is hosting a 5k/10k run, and the money will go to the hospital.

I didn’t participate. My heart pounding is still very strong. In case you didn’t know, I have a heart pounding sensation after transplant when I do minor physical activity and my heart starts to heavily beat. I could walk as little as 100 ft and have to sit down. Also, I don’t have much endurance. After my transplant, my heart has to readjust to my body, and it hasn’t yet. I try to push my endurance often, but doing a 5k is too much.

My Mom did. She told me that she met the doctor that took care of me in the PCU (aka a doctor I can remember).

June 24, 2018

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.

July 6, 2018

I also bought books, had a physical therapy appointment, and went to a bike shop.

Before my physical therapy appointment I bought books at Kepler’s Books in Menlo Park. Kepler’s Books is the bookstore I’ve mainly been going to when I’m staying at the Ronald McDonald House. I bought “The Empress” by S.J. Kincaid. I wanted to continue from the first book, “The Diabolic”, in her series because I liked how cunning the main & secondary character is and reading about the plot of toppling a powerful dictatorship. I also bought “The Testing” by Joelle Charbonneau because it combined The Hunger Games and the college application.

After buying books, I went to physical therapy. I talked to my physical therapist about how I was walking 20 minutes a day on the treadmill. I started walking 10 minutes, but then I gradually went to 20 minutes. I walk on 3.0 speed. I talked to her about running on the treadmill, and she told me if I was to run, I should do it on 4.0 speed. Moreover, I should be careful when running.

Last year I was sent to the hospital for leg cramps. My leg cramps were in my right and left calves, but they hurt devilishly awful. The doctors predicted that my blood thinning medication, Coumadin, interacted with my arrhythmia medication, Amiodarone, and caused swelling in my calves. Turns out amiodarone has a ton of side effects, so that sucks. After I was released from the hospital I was homeschooled for a month and a half before I could return. In site of not taking the medication anymore, my calves are still sensitive and will cramp after exercise.

My physical therapist asked how I was doing with my stretches. Before I left the hospital, they gave me a list of stretches to do everyday. I told her I was doing well with them, since I continue to follow their stretch everyday.

After my physical therapy appointment, I went swimming (see same post today). After swimming I went to a bike shop. My mom bought my bike from my house in Pleasanton to the Ronald McDonald House. I’ve outgrown that bike so we went to the bike shop to have it altered. At the bike shop they adjusted it, but my mom asked me if I wanted a new bike instead of my old bike. With a new bike I could bike faster and easier.

I told her no because I won’t be biking much in the Ronald McDonald House. I appreciate her offering though, a new bike is a lot of money! Since I want to focus on swimming and running, I don’t want to add the burden of biking. When I go home, I can start biking.

July 7, 2018

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

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.

July 17, 2018

Ramen Nagi, a restaurant chain in Japan, just opened their first U.S. location in downtown Palo Alto. Since downtown Palo Alto is walking distance from the Ronald McDonald House, we decided to go.

Ramen Nagi has a very long line, so if you decide to go but can’t stand up for a long duration of time make sure you can sit on something. Bring a chair if you have to.

I got the squid ink ramen and my mom got the Tonkotsu ramen. The Tonkotsu ramen was good, and so was the Tonkotsu ramen, but they weren’t excellent. I think the restaurant is over hyped, and it’s not worth waiting for.

July 20, 2018

Today my Mom and I walked to the Stanford Theater. The Stanford Theater is only 1 mile away from the Ronald McDonald house, so it’s very convenient if you’re able to walk. The Stanford Theater is an old school theater that shows movies made during the Golden Age of Hollywood, such as Casablanca or Gone with the Wind. Some of the movies are black and white, so it’s a cool vintage experience.

We watched Roman Holiday, and a part of Queen Christina. Roman Holiday is a movie that launched Audrey Hepburn into the public eye. Audrey Hepburn plays the princess of Rome who runs away with a random guy to have fun. Queen Christina is about the well educated Queen of Scotland that decided she didn’t want to marry.

If you’re at the Ronald McDonald House, or waiting to go to the Ronald McDonald House, you have tons of things to do at downtown. Being in the hospital sucks, but if you can travel to Downtown Palo Alto, there’s so much you can do. There’s restaurants, music, and the Stanford Theater.

After we watched the movie we went to a nearby bakery, Paris Baguette, to get some pastries. I don’t eat sweets, so I got the savory baked goods.

July 21, 2018

Every Saturday my Dad visits me at the Ronald McDonald House. This Saturday we decided to drive along the mountain.

We drove away from Palo Alto to the Windy Hill Open Space Preserve. We saw a great retirement center which I think would be perfect for my Mom. The mountain was nice, but no wifi, so that sucks.

My Mom and I also decided to walk to downtown for dinner tonight. The Ronald McDonald House is about one mile away from Downtown Palo Alto, so it’s bearable. I try to walk at least 10,000 steps (tracked by my Fitbit) everyday for my physical therapy.

We ate at Wahlburgers. Wahlburgers is a restaurant chain owned by Paul Wahlberg and partnered with his two brothers, one of which is the famous actor Mark Wahlberg. Wahlburgers even had a TV show made out of it.

We decided to walk back to the Ronald McDonald house by cutting through the Stanford Mall. If you’re at the Stanford Mall at night, it’s beautiful. The lights are still on and the music still plays, but no one’s there so you can enjoy the moment.

July 22, 2018

My mom’s friend visited me at the Ronald McDonald house today. She’s a principal at a preschool. We walked across the street to a cafe at the Stanford mall. I got to eat my salad filling my daily requirement.

Here’s my daily checklist:

  • 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

Today is my grandma’s birthday. I’m also leaving the Ronald McDonald house in a couple of days so we’re celebrating today as a going away/birthday party.

Kayano, Koda, his mom, and his grandma came to celebrate. Kayano is my next door neighbor being treated on dialysis, eventually leading up to his kidney transplant. Emma’s (pseudonym) family also came. Emma is my 16 year old friend at the Ronald McDonald House. We brought out a cake and served it to everyone except Kayano, who doesn’t eat.