My Mom’s friends visited me at the Ronald McDonald House at Stanford today. They’re super nice. They’re also super intelligent. One is a physics professor that graduated from Cornell University and published many books. Another is an air pilot that critiques movies on Rotten Tomatoes, owns multiple vineyards, and her son is a graduate at Harvard doing community service in India.
Tag: Mom
July 18, 2018
Across the Ronald McDonald is the Stanford Mall. My Mom, my grandma, and I went to P.F. Chang’s inside the Stanford Mall. We went to celebrate me leaving the Ronald McDonald House.
August 9, 2018
Later in the day I went for a general doctor appointment with my general practitioner. Everything checked out, and I don’t need any shots.
I also saw my doctor for the first time after transplant today. He is my cardiologist at Kaiser before my heart transplant. He’s the person that pushed me in the direction towards transplant.
When my Mom told me in the car that I needed a heart transplant, she said that she and him have been talking about it for several months.
August 11, 2018
Today was the Transplant Reunion Party. The Transplant Reunion Party is an annual gathering of organ recipients hosted by Lucile Packard Children’s Hospital at the Stanford Alumni Center. I got to meet people just like me!
When I arrived, there was a booth that awarded transplant patients with a medal saying “Your Type Of Organ Transplant Recipient”. Mine said Heart Transplant Recipient. They were shocked when I said I was only 4 months out of transplant. When I asked what organization they were, I became the one shocked. They were a club from my very own high school! More specifically the Pink Dot Club from Foothill High School.
Maddy, the club president, said her cousin died while waiting for a heart transplant, and that’s why she started the Pink Dot Club. Its motto is to raise awareness for organ transplant, and hopefully inspire people to become donors.
Discovering this club was so amazing because now there’s an entire club at school that understands my struggles. Once I start school, I’ll definitely be an advocate for them.
I was pulled aside during our conversation because there was another heart transplant patient speaking. This guy was younger than me, probably 10 years old. He had his transplant in March, not much shorter than I did.
His mom was starting to tear up. She described him being in the hospital and how hard it was. As any mother would, him suffering was also her suffering. When she got the call for the transplant, they were both so excited. It would be a new birthday! He had to be airlifted to the hospital, but he said he liked the helicopter ride. After transplant, he didn’t have to stay in the hospital anymore. His heart failure was over. He could now be a normal boy. They thanked Lucile Packard for their wonderful care, because all the nurses and doctors gave him wonderful support.
After his speech, I met with him and another girl. He’s a really nice guy! He appreciates his new heart everyday. I learned he also likes to swim. His mom was nice too. He’s really lucky to have a mom so well spoken that loves him so much.
The girl was another heart recipient. She was the girl at Make-A-Wish that made a fashion runway show (see August 9, 2018). She had her transplant when she was 1. She was put on the list and had the transplant within 24 hours (24 HOURS! Wow) of each other. At 11 years old, she’s doing volleyball, cross country, and gymnastics. She’s a normal athlete, and that’s awesome. I hope in the future I can be an athlete. She told me that because of my new heart, I can go to Transplant Camp, a camp where the only campers allowed are transplant patients under 18.
I then gave my social worker my letter to the donor family. My social worker spoke to me earlier about reaching out through a letter, so I spent last night writing it. I hope they’ll want to reach out too. I’d love to meet them.
Another person I met was Lizzy Craze. Lizzy Craze is pretty impressive.
She is the only heart transplant recipient in America, and likely the world, to survive 30 years with the same donor heart she received as a toddler… Lizzy was the youngest successful heart transplant recipient at the time of her transplant.
Stanford Children’s Health
Today she runs marathons and participates in triathlons. I told her of my dream to run, bike, and swim. She told me with my new heart all I needed to do was train.
Maddy, the club president for the Pink Dot Club came to return my medal. Together with the girl (the boy was out of sight) we decided to do some activities together. It was really fun experience. We colored plain converse shoes with rainbow sharpies and brushed thick paper with luscious amounts of paint. At the end of the Party, we exchanged numbers. The girl promised me to send a link to the Transplant Camp. Maddy and I will be working together on the Pink Dot Club. We’ll also see each other in school.
Outside of the Stanford Alumni Center, my mom and I ate sandwiches under the tree. She asked me “Did you have a good time?” I answered “Definitely.”
The doctor in the grey is part of the post heart transplant team in Stanford. 
Entertainment 
The woman next to my Mom is the medicine person. Before I left for the Ronald McDonald House, she went over all the medicine with me.
September 6, 2018
Noah came to Stanford this weekend. Noah is a 10 year old boy I met at the Ronald McDonald house that was receiving an experimental drug for his stomach cancer. Nolan and I send each other gifts (see August 7, 2018).
After school, my mom and I drove from Pleasanton to Stanford. We met Nolan at a seafood restaurant. His mom was so excited to see me. Nolan had to draw a lot of blood so he was pretty tired. He almost fell asleep while eating his food.
His mom told us that Nolan’s tumor has shrunk so much, that they might surgically remove it. However, they told me that the medication might work so well that the tumor might go away on its own.
They said that the care at the Stanford hospital was exceptional. At Phoenix Children’s Hospital the nurses didn’t give great care. The tumor was on Nolan’s back, so his parents explained not to touch his back. However when he went in for his CT scan, the nurses grabbed him on his back. Noah screamed out in pain. At Stanford’s hospital the nurses and doctors spent a half hour trying to work out the logistics for the CT scan. Where the pillow would go, where to position his back, how to transfer him on the bed. This is because the nurses at Stanford have to go through 7 rounds of interviews before being hired. Their care is exceptional.
After eating, we went to a Starbucks restaurant at Town & Village, a plaza in Palo Alto. Nolan also got gelato from a nearby shop. Nolan is doing great at his elementary school. He skipped a grade so he’s in 4th grade instead of 3rd. His teacher is actually a friend of his mom. His mom explained to the teacher about what happened. He has special accommodations, for example, he doesn’t participate in PE. Instead, he helps the teacher carry basketballs, We talked to his mom about a 504 plan.
Nolan’s parents said it was really lucky that I had my Mom. My Mom cares about me a lot, that’s why she brought me here today.
After saying goodbye, we drove back home.
September 27, 2018
Today was my appointment with the endocrinologist. I started seeing my endocrinologist when I was really young, after my first heart surgery at Stanford. Because of my heart failure, I didn’t have enough growth hormones in me. On the growth curve, I wasn’t catching up to my peers. Before transplant, 6x a week I would need to inject somatropin, a growth hormone, inside me.
I’m 5’3”. I’m at below average height, but at least I’m not at my projected 3’. The endocrinologist said that I could grow about one more inch.
In the same building was my cardiologist that urged me into transplant. He caught my Protein Losing Enteropathy, arrhythmia, and talked to my mom about transplant early in the year. My mom said he was a “miracle doctor,” and the reason I’m alive.
October 10, 2018
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 30, 2018
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
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.
November 15, 2018
My Mom decided to pull me out of school after study hall. The air pollution is so bad from the fire nearby. I signed out by the health office, and I met the school nurse. I told her I had a heart transplant, and she instantly knew that I was Justin.
She recommended me to not come to school tomorrow. She’s not the only one; all of my classmates also told me to stay home.
I’m considering it. I miss school constantly for doctor appointments, and I know when you miss one day of school, you do twice the work of that day. That’s why I’m hesitant to skip school.
It was nice meeting the school nurse.