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.
Today Dr. B retired. He’s been my oncologist for a while: since I was a toddler with Loeffler’s syndrome.
Dr.B has been amazing with what’s been happening. I haven’t seen him for a couple of years, then after I had my transplant I showed up at his clinic and was like “heyo!”
I was invited to his retirement party. A lot of his patients were invited and I had the honor of being one of them.
It was packed. The room had so many patients, all connected to him. There was a table with a lot of food — chow mein, egg rolls, dumplings — and I was encouraged to eat some.
Kim, my social worker from those toddler days, told me “everyone in this room has a story.” So I decided to seek out those stories.
There was a mom whose son was treated by Dr. B. Unfortunately, cancer got the best of him and he passed away.
There was another child who was 5. The mom told me he had cancer, but he was successfully treated and is now cancer-free.
Then the speeches started. Dr. B. had a motivating message: childhood cancer is devastating, but your future is what you decide it to be.
After that, patients stood up and talked about their stories with Dr. B. Some even cried. It was just that emotional.
One patient was 18 when she was diagnosed with cancer, but Dr. B. fought for her to stay on the pediatric side. She later learned if she was transferred to the adult side, she would’ve died.
The mom of the 5-year-old cancer free boy also stood up and started to cry.
His collegue, a doctor, said that although Dr. B. was a funny guy, he’s also very strong. When a patient passed, they both had an emotional, touching cry together.
Afterwards, patients lined up to talk to Dr. B. and say their last regards. I stayed until the food was being put away, so that I could ask about his plans after retirement. He said he wanted to study something.
I think it’s really cool what he did. He left behind a legacy of patients that are alive because of him. Many aspiring doctors studying in school start off with the dream he has.
Although it’s sad he has to go, it’s happy because he left a lot of joy behind. Overall, what a great life.
(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.
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.
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.
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