The Promise Land -April 27, 2019

Hello, world! Today is exactly one year since my heart transplant.

I cannot emphasize how important today is. The one year mark is my promise land: filled with happiness, liberty, and freedom.

I want to recap with what I was doing on April 27, 2018.

During Spring Break I was at Stanford for another procedure. My mom and I were looking at online schools for my sophomore year at High School.

Since I thought 2018 was my last year at a physical High School, I decided to have some fun. That weekend I was going to attend a club convention at San Francisco.

April 27, 2018, was a Friday and I was planning to leave on Saturday. Before I went to sleep, I packed for a night at a hotel.

At 3 am my dad woke me up. He told me there was a heart waiting for me.

When I was in the hospital, it hurt so much. I cannot stress how much pain I endured.

Holding onto hope was hard. Not only was I fighting physical battles, but I was also fighting mental battles.

I looked at the one year mark as my promise land. I said to myself, “One year from now everything and everything will change.”

Let’s be real, I didn’t have anything in the present, so I looked into the future.

I didn’t expect the pain to get to where I am right now, but I got here.

Not only did I survive, but I thrived. As Mr. Lewin told me, “You not only persevere through hardship, but you exceeded beyond all expectations. You knock on the door before blowing it up.”

That’s not what he precisely said, but it’s close.

There is hope in the world. I didn’t believe it in the hospital, but I sure do now.

I know that in the future I will face tremendous challenges I can’t even fathom right now, but with love, hope, and perseverance I can persist through anything.

Yes, I can persist through anything.

Hope is mankind’s greatest weakness and greatest strength.

Anonymous

☝️ fun I had with friends to celebrate

Cookbook Release Speech

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:

  1. Be healthy
  2. Be convenient
  3. 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)

April 30, 2019 – Cookbook Release

I released my cookbook today (and it was AMAZING).

Yesterday I was so excited that I stayed up late jamming to Hannah Montana.

Today at 2 PM I  left school and met Sammie, Kina, and Ray at the quad. Sammie drove us to my house, and at 2:30 there was a limo in front of my house.

I mean, a LIMO!

The driver drove us to the Ronald McDonald House at Palo Alto. My mom and grandma already left before us, so they were already there.

When we arrived we were greated by a photographer sent by Stanford. He took pictures of us, and my mom came outside.

Oh, and Kayano came! In case you don’t know, Kayano was my neighbor at the Ronald McDonald House. We spent the summer of 2018 together.

Kayano got his kidney transplant! It occurred on April 6, 2019. If you remember the joy of January 3, 2019 and the disappointment of January 4, 2019, Kayano’s kidney was long  overdue.

I’m so glad that I saw Kayano. It was nice touching up with old friends, especially seeing how well he was doing.

Another person that came was Jacob. I met Jacob at Camp Taylor, a camp just for patients with heart defects.

We grew up together, and he visited me at the hospital.

The inside of the Ronald McDonald House was incredible. Beth really outdid herself.

There was a table with a Make-A-Wish table cloth covering the surface, a custom poster with ‘Justin’s Just Recipes’ and my pictures on there, and the kitchen was fully ready for the presentation.

The cookbooks were beautiful. I know I saw them before on Shutterfly, but they looked better in person.

Are you ready for the most exciting part?

THE WATER BOTTLES HAD MY PICTURE ON IT!

I mean, you know you made it when the water bottles have your picture on it!

Along with that, the napkins had my name on it, and there were even bookmarks with my name on it!

WHAT?!?!

As we approached five, it became more and more hectic. Reporters and people showed up.  

It was AMAZING.

I met the CEO of Make-A-Wish, the CEO of the Ronald McDonald Houses, the board of directors of Make-A-Wish, the director of nutritional sciences at Lucile Packard, the director of marketing at Lucile Packard, and the East Bay representative of Donate Life.

I also met reporters from KTVU Fox 2 News, NBC Bay Area, KTSF Channel 26, Lucile Packard, The Palo Alto Weekly, and Make-A-Wish.

Get them contacts! Make those connections!

When it became five, I made my speech while mom and Victoria cooked the Pancit.

Click Here for my speech.

Afterwards, I signed a couple cookbooks and got interviewed by all the news stations.

It was special. Today was special.

A Lucile Packard representative asked if I was tired, but I told her no. Are you kidding?

I’ve never been the one who’s been noticed, or the person people would swoon over.

It was nice winning.

Bring on the reporters!

The driver drove Sammie, Alexa, Ray, and me back to my house in a black SUV (still pretty cool).

At home, Sammie sent Ray and Alexa back to their houses.

Reflecting back, I think today is more important than just a cookbook release. It’s a symbol of my heart transplant coming to an end.

I know that April 27, 2019 was technically the one year mark, but today feels more like the end of an era. I think today’s special event is really a sign to “move on”.  

Today was special. I’m so happy. Wow.

May 4, 2019

Every since the biopsy (April 24, 2019) my heart’s been acting a little weird. Sometimes I feel palpitations, like the ones that occurred right after transplant.

While swimming today, my heart had full on palpitations, which is weird, since I didn’t even do any strenuous exercise.

I decided to take today easy. Even with a relaxing swim, I still felt heart palpitations afterwards. It calmed down after ten minutes in the hot tub.

Yeah, it’s been weird. I could be sitting down doing homework when BOOM, BOOM, BOOM and then it’s gone.

I don’t know if it’s anxiety or if it’s actually real. I’m considering anxiety because last year I used to feel fake episodes of arrhythmia.

May 11, 2019

Today I had a full night of sleep, which is awesome. When I woke up, my undershirt was pulled above my chest, and my hand was on my chest.

My scar is still sore, but not as sore as it used to be last year.

Reflecting back, exactly one year ago from today, I experienced intense pain. I doubted my heart transplant so many times, because how could life-saving treatment be so painful?

I was wrong because everything is so beautiful right now.

I am so grateful for everything right now. For sleep, food, health, and comfort.

Count your rainbows, not your thunderstorms.

Alyssa Knight

May 21, 2019

It’s approaching the last day of school with only two weeks left, and that means yearbooks will be distributed soon. Suprise, yearbooks will be distributed tomorrow!

In case you don’t know, I’m going to be featured in the yearbook. Someone came to interview me on January 10, 2019 and take a picture of me on January 21, 2019. I have an entire two pages of a spread to myself, which is quite unique.

I know I should feel excited, but I’m feeling a bit nervous.

What am I supposed to expect? I’ll probrably recieve positive feedback from everyone, which is great, but then what?

I don’t want to be known as THAT heart transplant kid. I’m not just that heart transplant kid, I have more to offer.

Does this add to my personality or become my personality?

Throughout the year I haven’t been shouting it out on the rooftops but also not outright denying it. When someone asks me about it, I’ll tell them about it.

My biomedical class know about it (October 12, 2018), the Pink Dot Club knows about it (January 22, 2019), my last year Honors English class knows about it, and a random classmate even knows about it (January 25, 2019).

This time it’s different. It’s not that I haven’t had a lot of people look at my story before, but these people at school know me.

I’m so strange. I can handle telling random strangers about my heart transplant, but I can’t bear to tell people I know.

The truth always come out, but I don’t know why I want to hide what I am.

When I came in nobody knew my name. When I come out everybody will know my name.

Is this a good thing?

Last Day of School – May 31, 2019

Today was the last day of school, and it couldn’t have gone better. I officially survived my sophomore year (10th grade) of High School!

I did fine academically this year, which is unexpected. Another thing surprising is how well I adjusted back into life.

This school year was different from all the other school years because of my heart transplant. A year ago, I was picking brochures for my online High School. I was preparing to start my sophomore year online.

I think my most significant accomplishment of this year was my success. I not only survived, but I also thrived.

In a year, I started a blog, released a cookbook, and built healthy habits that’ll guide me for the rest of my life.

If I can do all of that within a year, who knows what will occur during the next year?

I have dreams, but for the first time, my dreams seem attainable. I’m so close to my goals that I can feel my fingertips barely grazing them.

As my English teacher said, “I’m expecting great things from you.”

This is only the beginning. The beginning of what? I don’t know. Whatever IT is, it’s going to be great.

Look out world, Justin Wang is coming!