July 6, 2018

I swam for the first time in seven years today!

I’ll start off with the swimming. I quit swimming when I was eight. I didn’t see the point in it since it only made me exhausted, and there were no results. I was swimming for 3 years, and I only managed to build up from 10 laps, 250 yards, to 12 laps, 300 yards. Swimming for me was exhausting. I wouldn’t even be halfway through a lap until my heart started pounding, my breathing would become desperate, my ears started ringing, and my vision would be blurry. That was my life.

It makes me sad that I couldn’t play sports like my classmates. If it wasn’t for my heart I would’ve advanced in swimming, maybe be on a team. Maybe I could’ve gotten a scholarship to college if it wasn’t for my heart. I could’ve played other sports too, like soccer or basketball.

After seven years of not swimming, I felt so much better in the water. The water soothed my joints and massaged my muscles. Immediately after transplant I was so sore that I couldn’t even stand.

I plan to start swimming as a sport. As I mentioned above, with my damaged heart I didn’t have the ability to play sports and therefore I was sad. After transplant I have a chance, and I’ll take it.

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 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 11, 2018

Today my Mom and I decided to go swimming at the Palo Alto YMCA. Before transplant, I was too weak to even exercise. I tried to swim, but 10 laps was all I could handle in an hour. However, during transplant education they said I could be able to play sports once I had a new heart. Now that I have my heart transplant, I can finally swim.

We brought Orion (pseudonym), another patient at the Ronald McDonald House with us. They’re from Hawaii, and they’ve been at Stanford multiple times. Orion loves the feel of water because it loosens up his joints. Ever since his brain tumor, he’s gained weight that’s been putting pressure on his joints.

I tried swimming, but I didn’t have as much endurance as I hoped. Nonetheless, I feel that I can improve on my swimming. Also I’m only 2 months out of transplant, so I should still be in recovery.

I had a great time swimming with Orion today. The YMCA is much better than the Stanford University pool, which I used before. Since The YMCA is also an inside pool, I don’t need to worry about the sun and skin cancer.

August 29, 2018

I had my biopsy today. A biopsy is a procedure to get a sample of tissue from your muscle. For me, they’re getting a sample of my heart tissue to test how much rejection I have.

I met Kayano’s mom at the hospital lobby. Kayano was my next door neighbor at the Ronald McDonald House. I hung out with him a few times and celebrated his birthday with him. Kayano has severe kidney failure, and has to be put on dialysis before he can be accepted on the transplant list.

Kayano is currently at the Lucile Packard children’s Hospital school. Kayano’s mom says the hospital school is super easy, but when I was at the hospital school it was hard to catch up with my classes at Foothill. Koda, Kayao’s little brother, is at the public elementary school in Palo Alto. The Palo Alto District is supposedly one of the best public school districts in the country.

I used less anesthesia this time, so I was awake during the biopsy. Surprisingly, it wasn’t painful. There was just pressure. Instead of crying out in pain, I just laughed.

Before I could be discharged the doctors examined me. They told me my prograf levels were good, and my medications would stay the same. I was happy with how the biopsy went. However, I can’t swim for a week in case the wound gets infected.

September 21, 2018

I had a swim lesson today. My coach knows about my heart transplant, my scar, and the fact that I’m immune compromised. She tells me if I need a break, then I should tell her.

It’s amazing that I’m swimming so long. Before transplant, I did swim but only 10 laps. What happened each lap was:

  • ¼ through: I run out of breath, my heart starts beating faster
  • ½ through: I gasp desperately for breath, my heart starts beating faster and louder
  • ¾ through: my heart is beating furiously, pain builds up inside my chest

I don’t feel any pain in my chest after swimming, which is a miracle. I run out of breath in one lap, not a ¼ lap.

My city, Pleasanton, is a very athletic city. Every one of my classmates is either doing soccer, football, hockey, basketball, cross country, lacrosse, tennis, golf, swim, water polo, marching band, or cheerleading. I think “I could’ve been that.”

In the lane next to me are kids my age swimming like pros. They have swimming scholarships towards a D1 school, and I can’t help think “I could’ve been that”. I was born normal, and if it wasn’t because of stupid hypereosinophilic, I could’ve played sports.

After transplant I have a new life. Instead of “I could’ve been that” is “I can be that”. In a few years, I can catch up to them and be as good as them. I have a chance, and that’s what matters.

September 28, 2018

Today was my doctor appointment. At 7 AM I woke up and got into the car. I slept on the whole ride to Stanford, except waking up to take my medicine.

I remembered to grab the cards we made at the Pink Dot Club meeting (see September 18, 2018). After putting on my mask, we went to my appointment.

After my echo, which is an ultrasound (the ones the doctors use to take pictures of babies in their womb) of the heart, we were told to wait outside. After a room was available, we quickly went inside.

The doctor examined me and told me the results were good. My Prograf levels were good, and they didn’t change anything. I talked to the doctors about my leg pain. Last year, I was hospitalized for extreme calf pain. After being discharged from the hospital, I had to be homeschooled for a month before I was able to walk around my school again. My mom expressed concern about it being from my hypereosinophilic syndrome, a blood disorder I contracted leading to my heart failure. The doctors told us to book an appointment with the doctor that deals with my hypereosinophilic syndrome (see October 16, 2018).

After the appointment, we delivered the cards. We went to the Cardiovascular ICU (Intensive Care Unit is where patients are admitted when they have a serious illness that needs constant monitoring) and delivered as many cards as we could. We also saw Jessica (pseudonym) and delivered her card. We couldn’t say hi because she was too busy with her VR game. Nicole’s room was empty.

The rest of the cards we donated to the Family Resource Center. The Family Resource Center is a department in the hospital that allows patients to rent games, movies, books, or is a place for families to relax or get work done. It’s where I rented the Mission Impossible series, Lord of the Rings trilogy, the Avengers series, the Captain America series, Matilda, Tom and Jerry, and other movies.

Later that day I had a swimming lesson at 4:30. I’m still a beginner at swimming, but I know I have the ability to get better. After transplant, I can even be on my High School’s swim team! After swimming, we met up with Joanna and Andrew (see June 16, 2018) for ramen.

November 8, 2018

I had a swim lesson with my swim coach today. She introduced me to a swimming in intervals. She told me to swim 2 laps (or one lap, whichever you consider 50 meters) and rest for 40 seconds, then repeat. Usually with advanced swimmers it’s a lot shorter, but for my fitness it’s hard. I did this for 20 laps (10 laps) or 500 yards.

After just one lap I started to hear my heart pounding and my breathing got harder. I don’t know if that’s normal for other beginning swimmers or if it’s unique toward my heart condition, but I know I can handle it with more practice.

I had a great time swimming today. Before transplant I couldn’t swim as much as I can today, and I’m so grateful for this opportunity to exercise and play sports.

November 12, 2018

I had a swimming lesson today, but because of the smoke in the air my Mom cancelled it. I live in Pleasanton, 2 hours away from the fire in Paradise, so the air quality is bad. The swimming pool is outdoors. After my heart transplant, I’m not supposed to be in smoky places.

Instead I just walked on the treadmill. In the Ronald McDonald House I used to walk on the treadmill everyday. Today I walked for 30 minutes on 3.0 speed.