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September 28, 2018

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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.

September 29, 2018

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Today I cooked with Victoria, the chef granting my wish. Victoria’s son also came. He’s a marketing (or media?) major so he’s helping Make-A-Wish by documenting our cooking sessions. We made soba noodles and ramen today.

For the soba noodles, we boiled them in water for a short amount of time. Simultaneously we fried tofu with only little oil. After we drained the noodles, we mixed them with the tofu and added some sesame oil, grated garlic, soy sauce, and green onions.

play-sharp-fill

For the ramen we boiled water with chicken and soy sauce to make broth. After about an hour, we mixed already cooked ramen with the broth. We shredded the chicken and added it on top of the ramen, along with tofu, red onion, and green onions.

Check Victoria out here: https://www.eastbayhealthychef.com/

October 2, 2018

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Today was the Pink Dot Club’s meeting. It was supposed to be dedicated to Nicole, but instead the club officers talked 90% of the time about a guy that got detention for criticizing his Honors English teacher.

Nicole was a beautiful girl that died at 10 (see September 20, 2018). For her entire 10 years, she has fought to be alive. Every year she had to be back in the hospital for another painful surgery. Club officers, do you even know, can you imagine, do you understand the pain? The pain that she and her family goes through? Her dad sold his restaurant chain to be with her daughter. Her mom always  with Nicole at her side. Her sister choose to stay with her instead of her grandparents. She said “I love Nicole, and I want to be with her.”

Club officers, that guy that got sent to detention because he confessed that he hated Ms. Hewitt or whatever has nothing to do with the club. Yet you spent more time on him than Nicole during the meeting that was supposed to be dedicated to her. Club officers, that guy is alive. He is breathing, he is eating, he isn’t in pain. Nicole is dead.

Club officers, I wonder how much you even care about your own club. Why are you officers of this club, when you can’t even dedicate a meeting without talking about your AP classes? Oh wait, I know! College! Club officers, you’re only here because you want to get into a good college. None of you care that a 10 year old girl is dead, you only care that it’ll look good on your college applications.

Nicole was in so much pain, she woke up screaming. She would curse and shout at the nurses until they put her back into a coma. Club officers, I hope that one day, you’ll realize how conceited you guys are. You guys do nothing to help those in the hospital. Oh my god “I made cards! I’m doing a dance vid for those in the hospital!” Except you’re doing that because you want to. None of you will actually go on a school day, skip your APs, and visit them in the hospital right?

October 2, 2018

~ Campjustin ~ 1 Comment

I contacted Amy. (see August 24, 2018). It relates to my first day of school (August 13, 2018) question: How do I transition back to being normal?

Hi Amy, I am the 10th grader with the heart transplant.

I just wanted to ask you a personal question. How did you transition back into normal life after getting out of the hospital?

No one understands what I’ve been through. After I tell my classmates, all I get is “cool story” or “Wow! I didn’t know that” or “that’s awesome”.

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.

Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Today, in the Pink Dot Club, we talked about a girl named Nicole who died waiting for a heart transplant. Except we talked about her for 1 minute. Only about half the club was listening. The next 20 minutes we talked about Honors English and the teacher for that class. Everyone was listening.

October 4, 2018

~ Campjustin ~ 2 Comments

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 5, 2018

~ Campjustin ~ 1 Comment

Mr. Lewin, my math teacher, told me after class that he’s been thinking about my story, and said it was remarkably inspirational. It flattered me, and I really thank him for what he said. He told me I should write about this and I told him I was considering it.

P.S. I did!

October 6, 2018

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Another cooking session with Victoria! Victoria is the chef that is granting my Make-A-Wish. Today we’re making salad. At Ronald McDonald house I developed a regimen:

  • 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’ve modified my schedule, but I stopped eating a salad each day. Therefore, I had Victoria help me with some salad recipes.

For our caesar salad, we first made our own croutons. We cut a French baguette into cubes, seasoned the cubes with italian herb seasoning, and tossed them with olive oil. The cubes were baked in the oven. Then a caesar dressing was made. Surprisingly there’s anchovies in a caesar dressing. Anchovies, mayonnaise, lemon juice, and mustard were blended. Finally, cut up pieces of romaine lettuce were tossed with the homemade croutons and caesar dressing. Shredded parmesan cheese and red onions were spread on top of the salad.

Next is the kale salad. Quinoa was cooked in a pot with water and curry seasoning, kale was chopped into pieces, and apples were cubed. After the quinoa was cooked, we mixed it with the kale, cubed apples, some red onions, and pecans. It was delicious.

Check Victoria out: https://www.eastbayhealthychef.com/

October 10, 2018

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Today was a PSAT testing day at my school. The PSAT is a test that prepares you for the SAT, and if you do really well on it, you can get a scholarship. This test is only offered one day a year.

I couldn’t take the test because today was my biopsy. A biopsy is an examination of tissue from the body. They poke me with a needle and remove tissue from my heart to test how much rejection I have.

Each biopsy, I’ve decreased each anesthesia dose. The less anesthesia you use, the faster you recover. This time, I wanted to try the biopsy without anesthesia. Since my recovery time was going to be short, I went to the Short Stay Unit instead of the Treatment Center. The Short Stay Unit is a unit where patients stay for a couple of hours/days. The Treatment Center takes you to the pre operation unit.

While walking to the Short Stay Unit, we bumped into one of the hospital school teachers. My mom asked her about college advice. We went to other college experts, but since my case was special they didn’t know what to do. The teacher told me there were a bunch of scholarships open to children to me, and the next time I go to Stanford to arrange an appointment with her.

During my biopsy, they inserted some “happy” juice. I was awake the entire time, but I didn’t feel pain. Just some pressure.

Afterwards, I had to lie down for an hour. Then I would walk a circle and lie down again. The nurses then checked to see whether the incision bled. We repeated that for 5 hours until the incision didn’t bleed. By the time we were discharged, it was 8 PM. With traffic, we got back home at 10.

October 10, 2018

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Brayden got his heart today.

In this video, https://www.youtube.com/watch?v=kHztirA23S8, it introduces Brayden, a boy from Bakersfield with heart failure. His mother said November 2009 the doctors said Brayden wouldn’t live until the summer if he didn’t have a valve replacement. By valve replacement, they mean replacing his aortic valve with an artificial mechanical one. “Following complications from being on life support, doctors said he may never have the energy to walk again.” This video follows Brayden on his first day of school, an amazing milestone which the family didn’t think was possible. After he gets his heart transplant, he wants to go on a cruise, go hiking, run, and play sports. In this video, https://www.youtube.com/watch?v=uEpAkWI_49U, it talks about how Brayden is now full time staying at Lucile Packard Children’s Hospital. Most specifically, it talks about one post about how Brayden “wants to get a map of 50 states and get a badge from all 50.” To pass time, they want to collect local police badges while he waits for his heart.

The boy that defied all odds against the doctors, lived to have his heart transplant. At 1 AM, his mom posted a live update on FaceBook saying that his heart had finally come. brayden is supposed to stop eating in one hour, but he doesn’t want to eat now.

Follow his updates on FaceBook.

October 12, 2018

~ Campjustin ~ 1 Comment

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.

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