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.

April 27, 2020 – 2 years!!

I cannot believe this. It’s been 2 years!! Happy transplanniversary (or second birthday)!

I won’t lie, it’s been hard. But the road was worth it. I’m going to reflect back on my life, and say it’s been surreal.

Every transplant recipient is a fighter. I can’t imagine how everyone else’s journey. Together, we make a community with a shared experience.

I’m also really excited for the future. I’ve been keeping up with my online classes, and I have very bright hopes for what’s coming. 🤞

I’m sorry if this is really short or if I can’t deliberate a lot, but I just want to say thank you from the bottom of my heart to the donor family, and everyone that’s supported me.

My mom and I are going to drive around (just got my permit!) and have a picnic from somewhere far away from people (still in lockdown) to celebrate.

I’m sorry about the sporadic updating of the blog and how there’s a bunch of holes and timeline missing, but I’ll get back to it and update it. Thanks for your patience! Bye 👋

May 29, 2020 – I’ve graduated!

I have some really exciting stuff to share… I’ve graduated! I know it’s crazy, but I’ve graduated from high school, and one year early too! Ever since the start of the coronavirus, I’ve transferred to James Madison High School, an online high school. James Madison High School is self paced, which means they give you the option to work as slow or as fast as you want.

When I have an opportunity in front of me, I never let it pass. I made the decision to accelerate through my classes and did! I’m really proud of myself for graduating a year early, because it means more time for my bachelor’s degree!

Because of the coronavirus, I’ve decided not to go to a four-year university. It’s just not worth paying full tuition for online classes. Instead, I’m going to save money and start at community college. My plan is to stay at community college for a year, and then transfer to university for Fall 2021.

As for the graduation ceremony, James Madison High School has one planned for September. Again, I’m not going (immunocompromised here). It’s alright, since the graduation ceremony isn’t that important to me anyway. 

October 20, 2020 – 18th Birthday

Guess who can legally vote now? Me! Why? Because I’m 18!

Legally being an adult is crazy. I feel as if I’m getting older but not wiser. However, in the eyes of the law I’m actually 18. Isn’t that crazy?

I think it’s about time that I stop using my age as an accomplishment. I’ve said before that I’m blank years old and have done X, Y Z, but now it’s just petty and irrelevant. I’m still proud of what I’ve done, but age shouldn’t really be a factor.

I’ll also have to stop going to Lucile Packard soon. I have Kaiser insurance, which ends my stay at Lucile Packard abruptly and transitions me to the adult program once I turn 18. The letter they sent me says I have until July, though.

Yesterday I had a mini freak out over turning 18, which did not help with my mom’s rambling about finances. I think that I’ll have time to freak out later, but my parents are still fine with me living in their house and not kicking me out, so that’s a plus.

Was turning 18 as exciting as I though it’d be? No. Am I really okay with getting older? Not really, but I don’t have much of a choice. Would I rather be under 18? No, because I have so much freedom now! Considering all the responsibilities being an adult carries, I feel (at least right now) it’s so much better than being a child. Numero uno makes their own decisions [terms and conditions apply].

Happy Birthday to me 🥳

November 12, 2020 – Transitioning to Kaiser

I thought I had until July, but apparently not. My mom got a call and said that now, now is when the transition happens.

Now that I’m 18, I can’t be going to Lucile Packard anymore. My insurance is from Kaiser, and the only reason I had my heart transplant at Lucile Packard instead of at Kaiser was because they didn’t have a pediatric heart transplant program. It’s really abrupt; my doctors at Lucile Packard say that their patients usually stay with them a few years until they’re in their mid-20s and then transfer to the adult program. For Kaiser, they have their patients transition to the adult program right after they turn 18.

I did have a voice in this, though. I’ve told my parents to not switch insurances. They gave me an option to switch from Kaiser to another provider that would allow me to stay with Lucile Packard and I said no. I just feel that this is something I have to do if I want to become a full-functioning member of society. I can’t really stay a kid forever and in the same way, I can’t keep going to a children’s hospital until my mid-20s. My doctors also told me I’ve matured a lot more than other patients and am ready for the transition. I memorized my medications, I receive my medications, I take care of my health, and I understand the importance of my transplant.

All said, I feel scared. Like I’m becoming an adult now and I’m not ready. I think this is normal for teenagers to feel but I’m going to miss my time at Lucile Packard, as weird as that sounds. Even staying in the hospital and looking outside the window is a memory. I’ll miss my doctors, anesthesiologists, nurses, and caretakers that were so nice to me. I’ve been with these doctors my whole life. I feel as if I’m breaking off from my childhood even if it’s not that big of a deal.

I think this is more than just care providers, this is growing up. I’m in college and whether I transfer this year or the next is also something new. I’m still in shock so I don’t know. I’m pretty sure I have a chance to say goodbye to my doctors but I’m going to send them an email. As for my anesthesiologists, nurses, and other caretakers, thank you so much! I hope you have a wonderful time in the future!

December 9, 2020 – It’s Finally Cheap!

My cookbook has been on a JOURNEY. First, people were asking for my cookbook and it wasn’t even available online. Then, I translated the cookbook and released it as a PDF, but everyone wanted a physical copy. After I self-published it, the price was over $30! Not even I, the author, would spend $30 on a cookbook. Now, for the first time ever, a physical copy is at a reasonable price.

I have to say, I’m proud of myself 😁. Today, I found a really great company called The Book Patch. They are AWESOME. They would be willing to print my book on demand for only six dollars! I mean, that is 5 times less than previous estimates. Even better, it’s available for anyone to purchase, not just me!

I was like “screw finals, homework, whatever.” I literally focused all day on translating my 10×8 in cookbook into an 8.5×8.5 in format. It was hard, I gotta tell you. They wanted me to use a software called Adobe InDesign, so I signed up to a $19.99/month student membership that I’m going to cancel ASAP. Not only did I have to get used to a new software, I wanted to finish it today (I was not going to work on it tomorrow, I got stuff to do!), so I rushed it as well.

The quality is not that great. I mean it looks like something a 5th grader would create. However, I’m still proud of myself. It’s $6.38!

I remember panicking when my cover photo that I spent 1 1/2 hours on failed to upload to their website 😂 Turns out they don’t do well on Firefox, so I had to use Microsoft Edge. Phew.

I’m mad that I’m probably gonna have to pay for another month for the Adobe subscription, because I’m most likely going to go back and refine the cookbook. I’m even more mad that I have so much stuff to do and now I’m distracted by the cookbook 🤷‍♂️ Oh well, that’s life. I bet the care team would love to hear about this. I’m meeting them tomorrow (oh, today? huh, it’s that late). I’m so excited! But also sad, again, lol.

The hard part was translating the cookbook in the PDF, I have to admit. I remember in the summer of 2019 staying up really late typing out all those words and arranging those pictures so that we could at least have something. This only took a day, but wow, that was difficult. So things could’ve been worse.

One of my biggest regrets was not publishing the cookbook when the Tasty video was released. There were so many people that were asking for a physical copy, but I was so focused on that other thing. Well, it actually wasn’t a waste of time; it was a valuable learning experience. We can’t be perfect.

Because, The Book Patch is very clearly made for written novels and not picture books, I’m unsure of how it’ll turn out. It obviously won’t be as glossy or laminated as Blurb. I hope they don’t reject it because I use a lot of ink. Oh well, we’ll just have to wait and see. At least I’m doing this for fun, if I was an author trying to make an income out of this, I would be biting my nails (this would be way worse). Thankfully not (at least for right now)!

Again, I’m so proud of you, Justin!! 😍

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