May 28, 2018

The doctors told me the reason I can’t walk much is because I have weak lung power.

It’s NOT lung power. It’s endurance.

So what if I get short of breath when I start walking? Everyone gets short of breath when they start jogging. That’s what I’m comparing walking to: jogging. Right now, walking feels like jogging. Your heart beats louder, you get short of breath, and you want to stop. The only difference is my heart rate doesn’t increase.

Before transplant I felt the same thing while running that I’m feeling now while walking. Before transplant, when I ran, my heart beats louder, and I got SUPER short of breath. In fact, I got so out of breath and my heart beat so loud I had to stop. It’s the same thing now (well, actually it’s a milder version), only that now it’s walking. See? It’s about endurance. If I had more endurance I’d still be feeling short of breath, but only during exercise.

March 26, 2019

Tomorrow I’ll meet with my G-tube doctor, and he’ll decide if it’s time to pull the G-tube out.

I’m scared, because in the past I’ve never had a good experience with that doctor. Like, never.

The G-tube is something I rely on, and it’s been hard trying to quit. I’m sorry if I’m not chronically ill enough for your sympathy.

Also, thinking about March 24, 2019, I have to go through with this entire process in fifteen years. Do I even need to pull it out?

Once it’s out, it’s out. For good.

That means if I slack off on nutrition, or become sick enough that I can’t eat, the door is closed. Forever.

Or if I go through surgery to get it inserted again. 😰

Would it be better in the long run to not remove it? Geez, I don’t want to think about it.

March 27, 2019

I call today a success!

Remember December 12, 2018, when the G-tube doctor told me I needed to gain ten pounds in three months?

I have gained ten pounds!

I told the doctor that I don’t think the medication need me feel more of an appetite, so I’m going to stop taking the Periactin (Cyproheptadine).

My mom is still a little nervous (and I am too! March 26, 2019) about pulling it out so we’ll wait until June. During June we’ll pull out the G-tube for good!

Since I have had the G-tube for almost my entire life, it’s most likely the hole won’t close up on its own. We might need stitches to close up the hole for good.

Also, when we pull the G-tube out, the hole will be leaking for a few days. I will be dripping everywhere, so I predict a big problem.

Oh well, we’ll cross that bridge when we get there.

March 29, 2019

Today I had another doctor’s appointment at Lucile Packard.

I woke up early today to get my blood drawn at the nearby Kaiser. Yesterday I took my medication at 9 PM so I could draw my blood at 8:30 AM.

Once my blood was drawn, my Mom drove us to Stanford. My appointment was at 10:30, so we arrived just on time.

First is echo, then the EKG, and lastly clinic (checkup) with the doctors.

During the echo, I was watching Bones. Bones is so cliche, it hurts. Why is Finn the most stereotypical southern character ever?

Shucks, I haven’t seen this much ash since my family BBQ!

(roughly quoted) (while sifting cremated remains)

Lol, okay.

Anyways, after the echo was the EKG. The EKG was very short, as always, but easy.

We updated the doctor at clinic about everything, and they said I was doing great!

Then we went to eat at the hospital cafeteria:

April 1, 2019 – Oncologist Appointment

When I came in to see my oncologist, he drank a jar of pee.

“April fools!” he shouted. “It’s actually Apple juice.”

I’m going to miss him. He’s going to retire on June 14, 2019. That means I’ll be switching oncologists.

Before you ask, I have an oncologist because I take a chemotherapy drug. Gleevec, the miracle drug used to treat my hypereosinophilic syndrome, is usually used for AML leukemia.

He had the idea to stop taking Gleevec at my last appointment (October 16, 2018).  

However, since Gleevec isn’t hurting me, there’s no reason to stop it now. Especially when my oncologist is in the middle of retiring, which I think is a good idea. 

Oh! I also introduced my blog to Kelly (my social worker when I was a child at Kaiser), and she said it was written beautifully. 

October 30, 2019 – Biopsy Day (Stopped Anesthesia)

(hi I read this journal entry and it’s kind of sassy for some reason so please be warned)

It’s great how I push snooze on the alarm but it’s actually blood draw day so I’m technically being late to the blood draw and oops can’t do that. We love it when my mom rushes through traffic trying to get to the clinic as soon as possible.

So I got my blood draw. Put on my mask when stepping outside because California can’t control their wildfires, and went back home to sleep until I had to wake up again.

We’re going to Stanford. Biopsy day!

If you don’t know, a biopsy is a procedure to take a piece of muscle tissue. The biopsy I’m receiving is a biopsy that’ll take a piece of my heart tissue to test rejection.

When I got to Lucile Packard, I met Jessica’s (pseudonym) grandma! The last time I met Jessica was on September 11, 2018. I made a card for Jessica on September 28, 2018

Jessica’s grandma and I have history way back. We used to see each other in the Ronald McDonald House all the time. We eventually talked and shared our stories.

On September 11, 2018, I talked to Jessica about my heart transplant. I wanted to tell her the truth because she deserved to know what was going to happen.

I knew how devastating Jessica’s story was. Jessica’s grandma has been in the Ronald McDonald House for a long time, and Jessica even longer. They were waiting for so long.

Guess what. Jessica got it. She got a heart!

In November 2018, Jessica received a heart and underwent a heart transplant. And she’s doing so well. She’s going to school full time, participating in PE, and living a normal life.

In fact, I saw her blood pressure and oh my god, it’s so good. It’s better than mine.

Jessica is a living example of the success of organ donation. Being in the “normal” world, it’s easy to forget what I’m fighting for. But my advocacy, speeches, and Tasty video is for patients like Jessica, Nicole, Brayden, and Justin Yu.

I can’t deal with needles. I hate them so much. Unlike other people, I’m weak (other people are not as bad as me). I had to develop a tolerance to needles because I experienced them so much, which is why I don’t cry. However, you’d think I’d get used to them.

Nooooooo

My nurse put in the IV, and my mom offered me her hand. I know I’m a baby, but I still hold my mom’s hand when the nurse puts in the IV. I held my mom’s hand and twisted it.

I was worried that the IV wasn’t working because I didn’t feel the blood rushing out, but it was a miracle. It was in!

Guess who popped out of the curtain and surprised me? Camila!!

Camila who? Camila my bestie from transplant camp! We met at Lucile Packard’s transplant camp for transplant patients, where Camila, Miranda, Rocky (pseudonym), and I became the four musketeers.

She’s my next-door bedmate. We’re sharing a room together!

I talked some more to Camila. She’s actually turning 17 on Friday. She’s going to celebrate by getting dinner with her family, and then hanging out with her friends the day after. 

Then she went to get her biopsy. How dare she leave me. But anyways she left, and I told the nurses about my Tasty video.

They gathered around at marveled at the high production value. Wow, I was there! They were super excited about it and said they would try it out.

Camila came back and it was my turn for the biopsy. 

I was wheeled down to the biopsy, went into the procedure room, went onto the table. Same old, same old, same old.

I was inspired by Camila. She came into the biopsy without anesthesia and without an IV. I could try that, I thought.

I decided to do this biopsy without any medications. No general anesthesia whatsoever. I could say the word and they would use my IV, but otherwise we wouldn’t use it.

I’ll describe what I felt: the cleaning of my neck with cold alcohol cleanser, a sharp pain from the needle insertion of pain medication, burning from the pain medication, a lot of pushing and pulling, and then a lot of pushing and pulling. At least that’s what I felt.

It was not bad. I think since I knew what wasn’t happening and was ignorant to how it felt like, it wasn’t that bad. Plus the sharp pain and burning was only for a second. Not even that bad.

Next time, I can go into the biopsy and not get an IV!

Too bad, being high feels great.

I came back to food waiting for me. My nurse is a godsend. She ordered the food while I was in the biopsy. Since I had to go NPO (no food) midnight yesterday, I was pretty hungry. 

My neck is sore (of course), but it’s better than being sore in the groin (where they struck before. last biopsy was the first time they used the neck). 

The doctors came in to check up on me.

I think I impressed my doctors. I told them everything I was doing since they last saw me: I went to LA and shot my Tasty video, the Tasty video was released, I met the American Heart Association, I’m implementing the American Heart Challenge in my high school, and I went to Phoenix.

In fact, I think I impressed them so much that they invited me to the Stanford Gala. The Stanford Gala, as Lindsay explained to me, was a ball dedicated to raising funds and awareness for children with congenital heart disease. I was invited along with some other families, and it’s on November 9. I’m allowed to bring two guests, and my mom is one of them.

I have to wear formal attire, which kinda sucks. Blue jeans, white t-shirt, and a hat is my signature look. I look horrid in formal attire, but oh well I can’t control my genetics. 

I looked at my emails and apparently there’s a virus outbreak at my school. I gave Donna the phone and she said to probably not go to school. Viral Gastroenteritis is a virus that makes you have explosive diarrhea, and I ain’t having that. 

However, tomorrow’s a minimum day because it’s Halloween. I think I can handle that.

My Echo nurse came in.

I talked to my Echo nurse about Halloween. She’s supposed to dress like a troll from Toy Story 4 (I never saw a troll in Toy Story 4??) for Halloween at the hospital but then costumes were cancelled. But then the cancellation was cancelled.

I’m going to go as a tourist. All I need is a lei and sunglasses and boom I’m done. Super simple, easy, and almost little to no effort.

My Echo nurse really likes old movies, just like me. In fact, she recommended me to watch Sabrina which I for sure will now. The original Sabrina with Audrey Hepburn, not Sabrina the Teenage Witch with Salem the cat.

My nurse I had last biopsy also came in. She’s my Gone With the Wind nurse. I swear, she understands my obsession with that movie. She said her favorite dress was the red dress that Scarlett sensually wore to Ashley’s birthday party, but that’s nonsense. The best dress was the curtain dress Scarlett wore to see Rett. It was funny seeing her wobbly and tumbly wearing that dress.

After the Echo, I was done. I could go home.

My nurse took out the IV, and ouch. Again, anything needle related is horrible. Even if taking out the biopsy doesn’t involve needles, there’s literally a plastic tube inside of me. I am so glad I won’t have to use an IV again.

Anyways, I said goodbye to everybody. I said goodbye and went back home.