Today is my doctors appointment. In the waiting area we saw someone from the Ronald McDonald House. She’s a toddler that had her heart transplant shortly after me. We met her at the Hospital Prom. She’s doing really well.
After my appointment, we saw Nicole (see September 20, 2018). Nicole is a 10 year old girl that’s been in the hospital since May. This is her 5th open heart surgery, but after kidney complications and a stroke she’s still in the Intensive Care Unit.
In the room next to Nicole was Jessica (see September 28, 2018). Jessica is a girl that’s also been in the hospital since May waiting for her heart transplant. In the Ronald McDonald house I met her grandmother. I told Jessica about my transplant, and life after transplant.
Today was my doctor’s appointment. Since my Mom is in Paris, I went with my dad instead. We left around 7 AM.
At the doctor’s appointment, I went in for an echo first. An echo is basically an ultrasound for your heart. Then I met with my doctor.
A funny story about my doctor: he knew me since I was a baby. When I was at Kaiser being treated for my hypereosinophilic syndrome, I was his first echo. When I was older and transferred to Stanford, I was also his patient. He said he only knew two people with hypereosinophilia, and I was both of them.
I recited my medication: 1 mg pill of Prograf 2x a day, 360 mg tablet of Cellcept 2x a day, 120 mg capsule of Cardizem 1x a day, and 100 mg of Gleevec 1x a day. If you’re a transplant recipient, you probably know all of them except for Gleevec. By my 3 months post transplant, I got off many drugs, for example Prednisone.
I lost a pound between now and 3 weeks ago. The doctor advised me to eat more protein. Since I am exercising, I’ll burn my calories and gain muscle. I’ll start drinking protein shakes again.
It is 6 months post transplant. Now I’ll only have hospital clinics, echo, and blood draws once a month. I’ll also only have to do biopsies once every 3 months.
I almost left the appointment without getting the flu shot. Since I am fresh out of transplant, I have to get my flu shot in 2 phases. During the last doctor appointment, I had my first dosage. This appointment I got my second dosage.
(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.