Hi, so this isn’t really a heart transplant thing, but I thought I might share this because it’s fun. Today I met my mom’s running group.
My mom told me that it was important to come because I might join the group. I’m not jumping up and down to start running. I know I was at the beginning of my heart transplant, but I don’t feel the need anymore. I’m already exercising really well.
I’ve never really had a positive connotation towards running. I’ve only ran the miles in PE (while my heart was damaged), and that was a HORRIBLE experience.
But anyways I met them, and as they went around sharing their stories I began to change my mind. Even though I’m not part of their group, I wanted to speak up and say I might be joining them.
The coach seems to really like me. My mom has been communicating with her about my journey, and she said my transition was amazing.
I hope they have a 5k or 10k training, because I don’t know if I can handle a half-marathon training.
(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.
Today I had an online meeting with Megan and Simone. In case you don’t know, Megan is my fellow heart transplant recipient at the other school high school in Pleasanton. Simone from the American Heart Association is in charge of youth programs along the East Bay.
I had already arranged for a meeting with my vice-principal on November 5. I’ll finally be meeting Simone in person for the first time! Simone will be talking to vice-principal Norrington about the American Heart Challenge while I’ll just be there.
I was a couple of minutes late and didn’t realize that my sound was muted, not Zoom wasn’t working, but other than that it was fine. Megan had a lot of great questions about the American Heart Challenge, and it was so great to learn about it. Honestly, I don’t know much about it either, so it was much of a learning experience for me as it was for Megan.
I also asked Simone some questions I had. Yesterday my doctor told me that the American Heart Association would have a national conference in Philadelphia (and it’s super big! Bigger than the Make-A-Wish national conference) and that sounds awesome. She asked me to email Kelly, so I did that.
I’ve decided to transfer to James Madison High School.
Due to the coronavirus, I don’t feel safe at school anymore. My type of school would have students come even if they’re sick.
I think it’s just better to be cautious. Since I’m immunosuppressed, I really can’t be risking this.
Even though it’s not horribly bad in Pleasanton, I have a feeling that it’s going to get a lot worse.
So I did my research on online schools, and I’ve decided to attend James Madison High School. The school is concurrent (year-round enrollment), affordable, and has a modern layout.
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 👋
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.
Today I had my annual study. My annual study is my biopsy, but more comprehensive because it’s done to evaluate my heart’s function at the end of the year. It was initially scheduled for April, but because of the coronavirus, it’s been rescheduled to today.
Miranda, my friend from transplant camp, told me about her biopsy experience. She had to get a coronavirus test two weeks before the procedure. The doctors at Lucile Packard are really cautious about COVID19.
On June 24, I waited for the coronavirus test. Luckily, they’ve advanced testing so it wasn’t two weeks before. We awoke early and drove in line about 30 minutes earlier because the tests at Alameda County Fairgrounds usually run out pretty fast.
“The test was like a feeding tube, but better,” Miranda told me. That’s what I thought about when the doctor put a test up my nose. It wasn’t that bad, but it did make me cry. I think it’s reflexive to cry, but luckily it wasn’t for that long; it only had to swab for 10 seconds. Overall, it was okay.
Today I drove to Lucile Packard. I don’t have my license yet (thank you coronavirus for closing all the DMVs), but I did have my permit. It was my first ever time driving to Palo Alto, which was a nice drive. The Dumbarton Bridge was also not as hard as I expected.
The first thing they do when you enter is check your temperature. Of course, temperature isn’t always the holy grail since people can be asymptomatic. They also require masks and hand sanitizer.
It was so nice seeing all the nice nurses in the short stay unit. Especially since they’re all super sweet, I’m glad they’re all doing well and staying safe.
We kind of got into the swing of things. The Cath Lab was ahead of schedule, so I changed into my hospital gown, got an IV (ow), and had anesthetic put on my groin (point of entry). They took some blood from the IV but I already had a blood draw earlier in the day. Did you know they’re not taking Prograf times anymore?
I was wheeled down to the Cath Lab, and then everything started. This time, since the annual study is more comprehensive than a biopsy, I did get the same amount of happy juice as last time. Anesthesia is great. I love the feeling of being high.
Another thing was everyone was wearing masks, even me. During the procedure, I didn’t notice the poking and shifting as much since I was high, but it was there.
You have to lie down (can’t even raise your head) for six hours. I was asleep for two hours, but that still left four hours passing by. I talked to my mom and watched Back to the Future.
I was sad to learn from Lindsay that today was my last biopsy. I didn’t even get to say goodbye to the biopsy team 🙁 Since I turn 18 in October, I’ll be transferred to Kaiser and won’t be a pediatric patient anymore.
Lindsay told me that a few pediatric heart transplant recipients did contract COVID19, but luckily they recovered. That was good news, but I forgot to ask about the long term effects. I’m really glad I transferred to James Madison High School. At the time, Foothill couldn’t be bothered to move to distance learning. Once I saw “First death in the United States from coronavirus,” I was like I have to go.
My blood pressure today was higher than normal. Usually I like to be under 120/80, but today they were above that. That’s still in the normal range, but for me that’s not ideal.
After I was discharged, I couldn’t even walk. My groin was so sore, and I had to be wheeled on a wheelchair.
The lobby of the hospital was emptier than usual. Probably because of the coronavirus, but it’s not like the hospital was a great place to be in the first place.
I was wheeled to the cafeteria and ate my meal outside. Afterwards, my mom drove back home to Pleasanton. My next appointment is in September.
My wonderful and amazing grandma passed away on August 4, 2020.
I will always remember her resilience, cheerfulness, and wisdom. She radiated love and kindness, virtue and integrity, and intelligence and perceptiveness. I was blessed to have her as my grandmother.
Growing up in a small village in China, grandma was the first girl in her family to be sent to school. She begged her family to study in the local school, where she was taught art, science, and literature. Her younger sisters followed in her footsteps and were also educated. In college, she studied education, with the hopes of becoming a teacher. During her early 40s, she became extremely ill, but fought her disease with the same resolution she carried throughout her life. After my mom came to the United States, my grandma followed and we became a beaming family.
Even though in Chinese grandma is 奶奶 (nǎi nai), our family always called her 婆婆 (pó po), per her local dialect. I remember taking Chinese classes so I could communicate with 婆婆 better. I also became Baptized before her death, to give her reassurance.
It was my privilege to become close with her. I have learned how to fight, learn, and persevere with her wisdom. She has lived an astonishing 90 years, despite doctors predicting she couldn’t survive 50. Grandma also helped me through my heart transplant recovery. The night before she passed, I held her hand; when I squeezed she squeezed back, acknowledging me. I think this is the reason she didn’t pass during the night.
As much as I loved her, I recognize the need for her to depart this life. She belonged in Heaven with grandpa and loved ones. We are all children of God, and I trust she is watching down on us. May her life be remembered and cherished.
By continuing to browse this site, you accept our use of cookies. AcceptRead More
Privacy & Cookies Policy
Privacy Overview
This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.