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October 16, 2018

~ Campjustin ~ 2 Comments

Today I saw my oncologist/eosinophil doctor. He usually treats patients with cancer, but since the drug that controls my eosinophils is a chemotherapy drug, I’m under his care.

I also saw Kelly (pseudonym) today. Kelly was my social worker when I was a baby, because when I was a baby I was cared at Kaiser before being transferred to Stanford. She was so shocked to see me as a teenager! She even said I was handsome (I’m not but that was flattering). After hearing about my transplant, she said she didn’t know. Apparently it wasn’t written on my record, which was weird.

The doctor was also shocked to see me! He said “No way, you look so old!” He also didn’t know about the transplant, so it was obviously not on there. He said he wanted to try to stop Gleevec, the chemotherapy drug that controls my eosinophils, because my hypereosinophilic syndrome was gone. If I get off the drug, will the disease come back?

The doctor is retiring in 6 months, so we want to be sure to have the test trial before he retires. Another doctor that doesn’t know my history of my eosinophils probably won’t be as good as he is. The doctor will call my post transplant team at Stanford.

October 18, 2018

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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 20, 2018

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Today is my 16th birthday! My friend, Lydia, and I went to the Oakland Zoo to celebrate my birthday.

I specifically asked Lydia to celebrate my 16th birthday with me because I needed to tell her about my heart transplant. Lydia and I have been friends since 3rd grade, but we don’t go to the same school, so she really didn’t know what was going on.

She was pretty shocked. I guess it’s kinda weird for her to talk about it, since it is a heavy topic.

Last year October my grandma prayed for me. I remember she cried when my heart was failing. She believed that transplant would be my cure. She asked God “Please heal Justin before his 16th birthday.” After my 15th birthday I was evaluated for the transplant list. My grandma kept asking me whether or not the doctors accepted me onto the transplant list. A month later they called my Mom and told her I was denied.

Today is my 16th birthday. I’m grateful for my new heart.

October 21, 2018

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Today I cooked with Victoria, the chef from Make-A-Wish. She brought a bunch of ingredients: chicken breast, thai basil, coconut milk, coriander, lemongrass, tofu, etc. We made Thai Basil Fried Rice and Tofu in Thai Green Curry.

For Thai Basil Fried Rice we marinate the chicken we cubed in soy sauce. Subsequently we fried the chicken in a pan. After the chicken was thoroughly cooked we added cooked brown rice. We added some sesame oil and soy sauce. Lastly, we added the Thai Basil, but only let it wilt for 30 seconds.

For the Tofu in Thai Green Curry, we made a green curry paste. For the green curry paste we added thai basil, roasted coriander, cilantro, coconut milk, shrimp paste, and lemongrass in a blender. After the paste was blended we added it to coconut milk that was being heated in a pan. After combining the coconut milk and paste together, we dropped tofu cubes into the mixture and incorporated it.

play-sharp-fill

I talked to Victoria after cooking. Victoria says she loves working for herself. She wants to focus on those with physical disabilities so they can be healthier. Maybe in the future, she volunteer in a hospital and cook for them.

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

October 26, 2018

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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.

October 27, 2018

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Today is 6 months since my heart transplant. To celebrate this, I bought a Christmas ornament with Ray. Ray was at a conference on my birthday, so this is our make up “celebration”. I had “Justin’s Heart Transplant April 27, 2018” personalized on my Christmas ornament.

The 6 month mark is important because that’s when I was predicted to be able to start exercising (I already did). After 6 months, I can start training for running.

October 30, 2018

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Today was another Pink Dot Club meeting. We made art kits for children at the UCSF Benioff hospital. Maddy brought plastic bags, brushes, mini canvases, and paints. We decorated the bags with stickers. The stickers said “You’re the best!” or “Love!” or “BFF”.

In my Biomedical Class we were talking about a project about how to introduce to a person they have a medical disease. If you’re reading this blog, then you’ve probably experienced this before. In reality a doctor just talks to you and says you have …. However, in our class we’re supposed to make an Instagram post or a song for the patients. Which is totally weird.

My teacher talked about his sister and mom going in for their breast cancer surgery. They met with a bunch of doctors and surgeons to remove the cancer. It was devastating for them.

I raised my hand to share my experience. Here’s my experience going in to be evaluated for the transplant list:

My mom told me I needed a heart transplant in the car. It was undoubtedly shocking. I couldn’t believe I was THAT sick. I wasn’t dying in a hospital, I was a normal person. My mom explained that she and Dr. Saba were talking about transplant for a couple of moths.

The official evaluation was at Stanford. I had to meet with a child psychologist, nutritionist, social worker, and doctors. The saddest part of the evaluation was the transplant education. Someone from the transplant team talked with me about what transplant was, how it works, waiting for transplant, and after transplant. I learned about rejection, the statuses, and my risk for cancer. The transplant education was so despairing that my heart started to act up. I never told her because I didn’t want to be deemed as not ready for transplant.

After the education I was rejected from the list. It was understandable; I was too healthy. A lot of the kids on the list need it more desperately than me. I was re evaluated for the transplant list on April 10, and they let me on as a status 2. The list has different statuses: 1A, 1B, and 2. 1A is the people that need it the most while 2 is the people that need it the least. Since Lucile Packard Children’s Hospital didn’t have a status 2 transplant for 4 years, I was on there for a taste of being on the list. It was highly unlikely I would get a heart.

2 weeks later I got the call.

November 2, 2018

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Today was my doctor’s appointment. Since my Mom is in Paris, I went with my dad instead. We left around 7 AM.

At the doctor’s appointment, I went in for an echo first. An echo is basically an ultrasound for your heart. Then I met with my doctor.

A funny story about my doctor: he knew me since I was a baby. When I was at Kaiser being treated for my hypereosinophilic syndrome, I was his first echo. When I was older and transferred to Stanford, I was also his patient. He said he only knew two people with hypereosinophilia, and I was both of them.

I recited my medication: 1 mg pill of Prograf 2x a day, 360 mg tablet of Cellcept 2x a day, 120 mg capsule of Cardizem 1x a day, and 100 mg of Gleevec 1x a day. If you’re a transplant recipient, you probably know all of them except for Gleevec. By my 3 months post transplant, I got off many drugs, for example Prednisone.

I lost a pound between now and 3 weeks ago. The doctor advised me to eat more protein. Since I am exercising, I’ll burn my calories and gain muscle. I’ll start drinking protein shakes again.

It is 6 months post transplant. Now I’ll only have hospital clinics, echo, and blood draws once a month. I’ll also only have to do biopsies once every 3 months.

I almost left the appointment without getting the flu shot. Since I am fresh out of transplant, I have to get my flu shot in 2 phases. During the last doctor appointment, I had my first dosage. This appointment I got my second dosage.

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