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.

July 13, 2018

There was a music festival today at Downtown Redwood City. My sister and dad also decided to visit me today. We went to the music festival, and it was really fun. There was a lot of people and sun, so I tried to sit in a shaded non crowded area. After transplant. I’m supposed to stay out of the sun since I’m more susceptible to skin cancer. I’m also supposed to stay out of crowded spaces in case of infection.

Downtown Redwood City is about a 5-10 minute drive from the Ronald McDonald House. I usually go to Downtown Redwood City because they have a movie theater. After the music festival we watched a movie called Skyscraper. Skyscraper had amazing graphic visuals that almost made up for the plot.

October 4, 2018

My 504 meeting plan (plan meeting?) was today. A 504 plan is a specialized education plan for kids with disabilities to give them extra accommodations. For example, if a kid had a learning disability a 504 plan would allow them to have extra time on tests. In my case, a 504 plan accommodates me when I’m in the hospital, have medical related illnesses, or in the rare case when I’m homeschooled.

Last school year my 504 plan was a lifesaver. When I was hospitalized last school year for calf pain, the 504 plan allowed me to be homeschooled for over a month. I was in the hospital for both semester finals, and the 504 plan excused me from taking them.

The vice principal and the nurse were there at the 504 plan meeting. All of my teachers except my Biomedical Sciences teacher (see October 12, 2018) and Chemistry teacher (see October 18, 2018) were there. I explained what I needed: unlimited bathroom access, access to the nurse’s office, extended time for missing schoolwork and homework, and the ability to move away from sick and coughing classmates.

After transplant, I’m very immune compromised. With a new organ, the immune system might see it as a foreign substance and start attacking it. Therefore, I have to suppress some of my immune system through my medication. If I do get sick, I have a chance of getting a live virus that will attack my heart or activate my lymph nodes that’ll trigger a cancer.

The school nurse understood the severity of the situation and gave the teachers a germ free classroom handout to pass in class. The hand out stressed the importance of not coming to school sick because of one (me!) immunocompromised classmate in their class. The hand out is included below:

The nurse said I’ve been through a lot, but told me this would be a great school year.

One of the students in this class has a medical condition that makes the student highly susceptible to infections. This is because of a medicine this student takes; there is no concern that this is a potentially contagious disease to any other person. We’d like to ask the parents to be considerate to the student and all the other students in the class.

Points to review for infection control (for complete district policy, refer to the health services website)

  • Do not send your child to school if she/he has a fever of > 100 F
  • She/he needs to be fever free for at least 24 hours before returning to school.
  • Do not send your child to school on fever reducing medication, she/he can still be contagious
  • If your child has been diagnosed with a significant infectious disease, such as chickenpox, please notify school health office
  • Do not send your child to school after she/he has vomited at home
  • Do have your child see a health care provider for any unexplained rash.
  • Immunize your child against influenza.

October 12, 2018

I talked to my Biomedical Sciences teacher today about my 504 plan. Biomedical Sciences is a class that explores the medical field and diseases, which is a great way to learn more about my heart condition.

I told him what I told my teachers. About what I needed. But he asked me how I felt. How do I feel before vs. after transplant? I told him that life was much easier. An example I used was sports. I couldn’t imagine how my classmates could run for 3 miles without throwing up, or run to the bathroom without being out of breath. Now I feel a new endurance I haven’t felt before. The doctors told me it was energy, but I think its endurance. More endurance to eat, more endurance for activity, or more endurance for daily activities.

The teacher asked me if I was okay with sharing my experiences later in the school year when we learn about heart disease. I told him yes, I’d love to! First the teacher passed out the germ free classroom handout (see October 4, 2018), then announced that I was the person that was immune compromised. He allowed me to explain my heart transplant and why being immunocompromised is important.

October 18, 2018

I talked to my Chemistry teacher today. She couldn’t make it to my 504 plan since she had an extra class to teach. I told her about my transplant, what I needed, and extra homework days. She easily complied. She also told me that she spoke with my last year’s science teacher, and that he asked about how I was doing. She said I was great: healthy and always optimistic even though I’ve been through a lot. That makes me real happy.

October 26, 2018

In my Biomedical Sciences class, we were doing a lab of setting food on fire. By setting food on fire, we could test how much energy was in them. However, there was smoke inside the room, and I didn’t want to risk infection so I sat outside of the classroom for the entire class period.

November 9, 2018

Pleasanton is really smoky today. There’s a wildfire 2 hours away, and as a result the air is filled with smoke. It’s so polluted you can’t see the sun.

When my dad stepped outside today, he said “Is this air quality okay for Justin?” My mom asked me if I wanted to go to school today. I told her I wanted to, but I said I would wear a mask.

When I was staying at the Ronald McDonald House I had therapy sessions with a psychologist, WIth my therapist we discussed about wearing a mask. I told her I didn’t want to wear a mask, since it made me stick out in school. However, I know that i definitely should wear my mask today.

When I got to my class, my classmate told me she didn’t expect me to be at school today. She said that since the air was so bad, I would’ve stayed at home.

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.

November 13, 2018

I met Amy McCarthy at the school library today.  Amy McCarthy is the library substitute I met at my High School’s club fair (see August 24, 2018). She had a kidney transplant when she was 40.

Today I have a dental appointment. My last dental appointment was February 2018 because I’m not allowed to have a dental appointment until 6 months after transplant. The dentist told me I should brush more. If there’s plaque on my teeth, the bacteria can get in my bloodstream and potentially damage my heart. Now instead of brushing 2 times a day, I’ll brush 3 times a day. It’s a small price to pay compared to the alternative.

Today I couldn’t swim outside. The smoke from the fire is still polluting Pleasanton, so I had exercise inside. I instead exercised on the treadmill:

  • 20 minutes walking on 3.0 speed
  • 20 minutes running in intervals on 4.0 speed
    • 1 minute runs with 20 second rests

I used the exercise technique my swim coach taught me (see November 8, 2018). Exercising in intervals is a great way to build up my endurance. My main focus with exercise right now is endurance instead of speed.

I walked for 20 minutes, and ran for a total of 15 minutes.