Before we start, I’d like to dedicate this speech Nicole Faith and Justin Yu.
Okay,
Hi everyone, my name is Justin Wang! I’m a tenth grader from Pleasanton, California and 16 years old.
This is my mom: Yang Wei, my grandma: Suzan Zhang, and the chef I worked with: Victoria.
I would also like to honor the unsung hero: Beth. Beth has done an amazing organizing this event. She has been so nice, understanding, and it has been such a pleasure being with her.
First of all, I would like to thank everyone that came today. It’s April 30, 2019, aka a Tuesday, and weekdays are a horrible time to have events.
As you can see, my friends Ray, Kina, and Sammie showed up, which is awesome. Actually, let me introduce each of them.
Ray is literally the smartest person I know. He’s a genius at school. Y’know, I try at school but he doesn’t even have to. He’s just that good.
Last year, I had chronic heart failure and Ray was the one of the few who supported me during that rough time. It’s so special to have a friend that’s both smart and empathetic.
Speaking of kindness, Kina is extraordinarily kind. When asked about her biggest flaw, she said “caring too much”.
Kina was actually the first person invited to the cookbook release. I was initially going to come today alone, but Kina accidently found out about my cookbook release and she said, “I want to support you.” That was so sweet.
Sammie is a very passionate person. She’s unapologetically charismatic, stunningly beautiful, and has a determined personality.
Fun story, the first day of cheer tryouts are occuring right now. She confirmed with her coach before that missing today was okay, so we were fine. Then five days ago her cheer coach called her and said, “Hey, if you miss today you’re automatically disqualified.”
Sammie and I were so sad until she had enough. She texted her coach, “Hey, I’m coming to Justin’s release and I don’t care what happens.” Finally, her coach caved in and said, “Fine, just come back on Wednesday.”
(clapping)
I really appreciate the sacrifices everyone made to be here, especially the doctors. I know patients require 24/7 care, and it’s hard to leave that environment.
Also, if you drove here, oh my god, Palo Alto is horrible, isn’t it? The traffic is insane, but it’s still nice cause, I mean, Silicon Valley.
So if you’re here, that means a lot to me, and it’s awesome to have you here.
Anyways, we’re going to make Pancit right now. Pancit is the Philippines’ signature dish, and it’s delicious. We season them with soy sauce and fish sauce and add a lot of vegetables.
At our first session, Victoria looked around our house and saw that I bought one of those pre-packaged Pancit sauces. Victoria said, “We shouldn’t do this because there’s too much salt.” (and salt is really my enemy right now)
Pancit became one of my favorite recipes because noodles are my favorite food. In this cookbook, there’s a ton of noodles. In fact, the first draft of the title was “Justin’s Just Noodles & More,” but I decided not to keep it because that’s an oxymoron (incorrect grammar).
While they do that, I think it’s time to describe my wish. So I knew I was eligible for Make-A-Wish, and I thought that was really cool, but I didn’t even consider using that wish.
So June 26 rolled around, and there was a Make-A-Wish representative at the Ronald McDonald House. My first thought was to put solar panels on the roof of our house, but my mom said that was a dumb idea.
My second thought was to travel around Europe on a food tour, but my mom also said that was a dumb idea.
The third idea was my brilliant idea. Why not a heart-healthy cookbook designed just for patients like me?
I had three main goals for this cookbook:
- Be healthy
- Be convenient
- Taste good
I thought this idea was excellent. After a heart transplant, I needed to be careful about my health. Nutrition is an essential part of health so it would contribute significantly to my health.
Not only would it benefit me, but it would also benefit a lot of people like me.
I‘ve always loved food (and who doesn’t like food), but I’ve never eaten full time. I ate for fun, not for fulfilling my human needs.
You can’t see it right now, but I have a G-tube. And what a G-tube is, is a tube inside my body that connects directly to my stomach. With that, you can insert nutrients.
So every night when I went to sleep I’d hook myself up. Throughout the night there’d be a constant stream of 1,000 calories, Nutren 2.0.
After my heart transplant, I have a bigger appetite than before. That basically means I can eat more than before.
I’ve tried eating full time before. Then signs of chronic heart failure returned, and I was forced back onto the G-tube feeding.
I am happy to report that I’ll be getting my G-tube out. On June 12, it’ll be gone, and I’ll finally be wireless.
(clapping)
Does anyone want to hear about my heart transplant? I know that you’ve guys probably heard patient stories a thousand times before.
Well basically, when I was two, I was rushed to the local hospital. It was Christmas day, actually, and I was transferred to a more urgent hospital: UCSF Benioff Children’s Hospital.
It took them about a month to diagnose me with this super rare blood disorder called hypereosinophilic syndrome. It’s when you have too much of this specific white blood cell called eosinophils.
It must’ve been a one in a million (and I predict it’s higher than that) gene mutation.
Kina, can you get out your phone? Tell me what’s one divided by one million?
~~~~
“Wow, pretty low right?
Okay, can you do another calculation? What’s one divided by five million?
~~~
Yup, that’s the number.
That was my chance as good as yours as being that number. And that gene mutation, in particular, was very cruel.
An immune system attacks, so it attacked my heart. By the time doctors at UCSF diagnosed and treated me, the damage was done.
The entire right side of my heart was damaged. At age two I was transferred to Stanford for my first open heart surgery. With a GLENN procedure, they bypassed my right ventricle to go to my lungs.
Y’know, that surgery doesn’t last forever. The doctors told my mom, “Hey, it’ll wear off when he’s a teenager” and she was like “okay.”
And everything I told you about, I have no memory whatsoever. I was so young that I forgot it all.
And that made it easy for my mom. My mom told me nothing about my hypereosinophilic syndrome, nothing about Stanford or UCSF, and nothing about my heart.
She said, “It’s better to live in ignorance than in fear.”
I don’t agree with that, but I don’t disagree with that either. My mom had a decision to make, and it was the lesser of two evils.
Also, I’m not saying I’m totally dumb. I know I had a feeding tube, I know I had a scar, and I know I had shots every day, but I didn’t know why. I didn’t think it was that serious.
When 2018 rolled around, I was experiencing chronic heart failure again. This time my mom told me everything. In a car ride home, she said, “You have chronic heart failure.”
When someone hits you with all that, it’s pretty sad. Not gonna lie, it was sad.
So I dealt with that. Then I went in for transplant evaluation. Oh my god, that was, that was bad .
The transplant team met, and denied me. The reasoning was that I was too “healthy” to be on the list.
After that everything went downhill. I had more frequent visits to the ER, more checkups at the hospital, and I missed more and more school.
So the second time I was evaluated, they were like “why not.” They accepted me, but as a status two.
If you’re not familiar with the list, a status two is the worst place you can be. It’s the position that’s the least prioritized.
A doctor said I was on the list “for a taste of being on the list” and I wasn’t there for real.
The last time a status two had a heart transplant at the Lucile Packard Children’s Hospital was four years ago.
Two weeks later, at 3 AM, my dad woke me up to tell me that a heart was waiting for me.
(clapping)
In case you guys didn’t notice, today is April 30. Well, my heart transplant was on April 27, 2018.
Last Saturday (April 27, 2019) I celebrated my one year anniversary. I decided to honor my heart by having fun with my friends and family.
I cannot emphasize the importance of the one year mark.
Remember in the bible when God promised Abraham and his descendants a land where they’d have salvation, liberation, and freedom?
Well, the one year mark is my promise land. The doctors promised me a new life: one filled with activity, normality, and freedom.
I didn’t really expect all the work that I had to put in to get towards that promised land, but I got there.
If there’s one thing you should know about me, it’s that I’m very dedicated. I’m determined to keep my heart with me for longer than fifteen years. I eat healthy (thanks to this cookbook), exercise every day (either underwater or on land), and am always cautious about my health and the world around me.
I’m pretty proud of what I’ve accomplished within the span of a year. I’ve completed a cookbook, started a blog, and established healthy habits I’ll carry with me for the rest of my life.
In case you’re wondering about the cookbook’s name, I decided to name it ‘Justin’s Hearty Recipes’. I named it that to honor my heart, and emphasize that my heart transplant would always be an important part of my life.
‘Justin’s Just Recipes’ became more than just a cookbook, it’s a symbol of hope. Hope that even in horrible situations there’s always a light at the end of the tunnel.
I love this quote, and it’s by Helen Keller: “Although the world is full of suffering, it is also full of the overcoming of it.”
She couldn’t have said it better. Through difficult times, we can give up and immerse ourselves in despair and sadness, but we can also live in an atmosphere of hope and expectation of light.
Thank you for coming to my cookbook release. I’ll be signing cookbooks soon, but in the meantime, feel free to try the Pancit.
(clapping)
