May 9, 2018

Today is my first biopsy.

A biopsy is a procedure where they take a small machine that goes through your veins, and takes a piece of your tissue. For me, it’ll take a piece of my heart tissue. That way, the doctors can test my rejection.

The nurses put some “happy juice” inside of me. I instantly got high. I actually like this feeling! Then I went to sleep.

When I woke up there was band-aid over my incision area. I felt nothing during the procedure. I think it only took 15 minutes. I was told not to move for 2 hours. I was feeling really sweaty by the time that 2 hours was up. The reason was because of my hot and cold sensations; I feel extremely hot when I lie down.

I’ve resorted to watching tons of movies.

Today I’m watching Lord of the Rings.

My hot and cold sensations are so uncomfortable that I can’t even sit comfortably. I always have to adjust myself so that I don’t get sweaty.

I also keep hearing my heart pounding. It’s always THUMP, THUMP, THUMP, all the time. Even when I’m doing nothing!

I also can’t get any sleep. None. I’m doing nothing all day yet I can’t get any sleep. That sucks.

May 25, 2018

I woke up early today at 7 AM. Today’s my biopsy.

A biopsy is when a tiny machine travels through your veins and grabs a piece of your muscle tissue. I’m having a cardiac biopsy, which means they’re getting muscle tissue from my heart.

They put an IV in me, then injected me with medicine. I’m doing full anesthesia, which means I’ll be put fully to sleep during the procedure.

At my other biospies they can gradually reduce my anesthesia until I don’t use anesthesia anymore. The less anesthesia I use, the faster I can recover and get out of the hospital.

When I woke up, my thighs were orange and there was a band aid over my groin. I had to wait two hours before I could get up again. After those 2 hours, I was discharged from the hospital.

June 20, 2018

I had a biopsy today. A biopsy is when they take a sample of your muscle tissue. For me, I’m having a cardiac biopsy, which means they’re taking a sample of my heart’s tissue.

We went in for the biopsy at 11 AM, however the biopsy was delayed until 1 PM. Then the biopsy was delayed to 3 PM. It was okay; I watched some movies while waiting. Someone also came in and gave me a $15 Apple gift card for waiting.

This biopsy I wasn’t put on much anesthesia, so I could recover faster. I went in and out of consciousness during the procedure, but I was high so that’s okay. I love being high. When I was in consciousness, all I felt was pressure: no pain.

I left the hospital at 5 PM. The procedure was very short, but recovery takes a majority of the time. That’s why I left so late.

August 29, 2018

I had my biopsy today. A biopsy is a procedure to get a sample of tissue from your muscle. For me, they’re getting a sample of my heart tissue to test how much rejection I have.

I met Kayano’s mom at the hospital lobby. Kayano was my next door neighbor at the Ronald McDonald House. I hung out with him a few times and celebrated his birthday with him. Kayano has severe kidney failure, and has to be put on dialysis before he can be accepted on the transplant list.

Kayano is currently at the Lucile Packard children’s Hospital school. Kayano’s mom says the hospital school is super easy, but when I was at the hospital school it was hard to catch up with my classes at Foothill. Koda, Kayao’s little brother, is at the public elementary school in Palo Alto. The Palo Alto District is supposedly one of the best public school districts in the country.

I used less anesthesia this time, so I was awake during the biopsy. Surprisingly, it wasn’t painful. There was just pressure. Instead of crying out in pain, I just laughed.

Before I could be discharged the doctors examined me. They told me my prograf levels were good, and my medications would stay the same. I was happy with how the biopsy went. However, I can’t swim for a week in case the wound gets infected.

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.

January 16, 2019

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.

April 24, 2019 – Biopsy

Today I had a biopsy.

What’s a biopsy? A biopsy is when they take a piece of tissue. I had a cardiac biopsy which means they took a piece of tissue from my heart.

It was the same old, same old routine. I went to the Short Stay Unit, had a bunch of anxiety for putting the IV in me (because needles hurt), got the IV in me, met the doctors, and went in for the biopsy.

The biopsy is always in the groin. They’ve never done it in the neck before because of my scar. 

During the biopsy, I prefer not to be unconscious. The more anesthesia you have means the more time you spend to recover. I’m pretty sure my ultimate goal is to go in and perform the biopsy without any anesthesia (not even happy juice), so that way I don’t have to get an IV in me. If you can’t tell, I hate IVs.

However, this time I faltered. In my biomedical sciences class at High School we watched a video of a biopsy, and I was thinking of that. I kept thinking of that string thingy going through my blood veins and down to my heart and I guess that freaked me out. They had to give me some more anesthetics to calm me down. Then I got high.

I hate how I have to lie down for four hours in recovery. I’m not allowed to roll over, sit up, or do anything. Just lie down and do nothing.

My doctor came in for a regular check up. Same old, same old. What medications I’m taking, my blood pressures, and any signs of illness. 

My doctor said she was excited to come to my cookbook release. Coooooool. I’m still high tho.

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.

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.