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December 7, 2018

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I had a doctor’s appointment at Lucile Packard Children’s Hospital today.

We left Pleasanton at 8 AM. We arrived at Stanford just in time for my 9:45 AM appointment. We checked vitals first, then I had my echo done. An echo is short for an echocardiogram, which is a test that takes pictures of your heart. It’s like an ultrasound for the heart.

After the echo, we went to the clinic. The clinic is the part of the appointment when you talk to your doctors. Everything is great. My sneezing is okay. I don’t think I’m sick.

My Prograf levels are also great. The level is 6.3, and my goal is between 6 and 8. I’m taking 1 mg of Prograf in the morning and 0.5 mg of Prograf in the evening.

In translation, my immunosuppressants are doing their job well. My immunosuppressants also have a range, and that range tells us how much immunosuppressants are presents in my body right now. My blood is checked regularly because we want that range to fluctuate.

I also noticed that I haven’t had leg pain for a while now. Leg pain refers to when I have pain in my calves. Before my heart transplant, my leg pain was so bad that I had to stay at home for a month.

My psychiatrist also came in. If you remember, in the Ronald McDonald House I had a psychiatrist that I had to meet with every Friday for 5 weeks (see May 22, 2018). Well, that psychiatrist graduated, so I have a new one. Anyways, I told her that everything has gotten better since the first day of school.

The doctors said I could go to transplant camp over the summer. If you remember the transplant reunion (see August 11, 2018), a girl mentioned transplant camp.

Anyways, after my appointment, I ate at the hospital cafeteria. The hospital also opened their gift shop and I bought a jacket there. Afterwards, I went home.

December 10, 2018

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Today I had an orthodontist appointment. I didn’t need to take antibiotics for the orthodontist like before since I’m already 6 months post transplant.

I also had a swimming lesson. Reflecting back to before transplant, I’m so glad to be able to actually exercise. Doing sports is awesome, even if I’m really bad at it.

December 12, 2018

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I think I’m losing hope.

My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.

Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.

I’m so sad.

Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.

The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?

Yet.. yet I can’t survive without it. That makes me sad.

I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?

I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!

And it’s not working!!!

Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.

Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.

I’m also nervous about starting the medication.

When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.

Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.

It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.

So what am I going to do about it?

In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.

For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.

The future of my body depends on these 4 months between today and March. I need to gain weight.

December 15, 2018

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Ever since my doctor appointment with the G-tube doctor (see December 12, 2018), I’ve been checking my weight.

I’m around 100 pounds, but my scale is weird.

I’ve been checking my weight in the morning and at night, and I could weigh 104 pounds at night, but 102 pounds the next morning.

I’ve also been noticing my eating patterns.

I think the problem is that I’m always constantly hungry.

I think I’m so used to hunger spasms that I’ve learned to ignore them, and they eventually go away.

When I do eat, I quickly become nauseous.

Hopefully, that’ll change.

Also, I have not started on those appetite pills yet. I want to have Stanford approve them before I start taking them.

I have 3 months to gain 10 pounds. Gotta get that extra fat.

December 16, 2018

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When I went to go swimming today, I saw my classmate in the locker room.

He’s better than me in every way: better grades, better friends, and better looks.

He was also changing into a swimsuit.

I didn’t want to swim with him in the pool.

Guess what I did.

I left.

I left the locker room and didn’t go swimming.

I don’t want to show off how terrible I am compared to him.

What the point of this journal entry?

Idk.

I guess I don’t have a point.

December 19, 2018

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My appetite medication was approved by the doctors at Stanford. They said that other patients also take them.

I don’t think I actually want to take them.

The reason is that I don’t want to get help for something as basic as eating. That’s a little embarrassing.

I think I’ll just eat.

But can I eat?

I don’t know.

December 20, 2018

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My Mom and I met with Victoria today to talk about my cookbook.

We went to Lokanta, a restaurant in Downtown Pleasanton. Their food was good.

Victoria has to recreate the recipes and make sure they taste good. Now is Victoria’s winter break so she has time.

After she tests the recipes she’ll send them to us and we’ll recreate them too.

Then our recipes are finalized!

The process after that will be to take pictures of the food, and then a picture of me for the front cover. Maybe I can do what everyone else does: holding a plate of food and smiling into the camera.

Our goal is to publish the cookbook before February.

December 23, 2018

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I was wrong about Maddy.

Today I went to Happy Lemon to meet up with Maddy, the Pink Dot Club president. The Pink Dot Club is an organ donation club at my High School.

Remember October 2, 2018? That was the Pink Dot Club meeting which was supposed to be dedicated to Nicole. When Maddy glossed over the fact that Nicole died to talk about a class instead, I got mad.

Here’s an excerpt from my journal entry:

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.

Yeah, that’s a little passive aggressive. Or just aggressive.

Later that day I emailed Amy McCarthy, someone who had a kidney transplant. This is another excerpt:

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!

Reflecting back, I wasn’t angry because they ignored Nicole. Deep down inside, I think I was mad because I would never fit in with them.

If they glossed over Nicole’s death, then it implies they care more about their classes than someone that just died.

And their entire premise is for organ donation, and helping those waiting for an organ.

If they don’t care about organ donation, then where do I go?

Well, I was wrong. Or at least about Maddy.

Maddy is doing the Pink Dot Club because she wants to, not because of college. In fact, she didn’t even have college on her mind when creating this club.

It was because her cousin (who’s also named Justin) died from a heart disease.

I thought, “Her cousin just gave her the idea, but she did this for college.”

I was wrong, so I’m sorry Maddy.

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