Today is my doctor’s appointment, and tomorrow I’ll leave the Ronald McDonald house. July 27 is 3 months post transplant, but since I’ve been very healthy I get to leave early. I don’t know whether I’m happy or sad, but I know once I leave I’m officially “healthy”.
Today was my appointment with the endocrinologist. I started seeing my endocrinologist when I was really young, after my first heart surgery at Stanford. Because of my heart failure, I didn’t have enough growth hormones in me. On the growth curve, I wasn’t catching up to my peers. Before transplant, 6x a week I would need to inject somatropin, a growth hormone, inside me.
I’m 5’3”. I’m at below average height, but at least I’m not at my projected 3’. The endocrinologist said that I could grow about one more inch.
In the same building was my cardiologist that urged me into transplant. He caught my Protein Losing Enteropathy, arrhythmia, and talked to my mom about transplant early in the year. My mom said he was a “miracle doctor,” and the reason I’m alive.
Today I saw my oncologist/eosinophil doctor. He usually treats patients with cancer, but since the drug that controls my eosinophils is a chemotherapy drug, I’m under his care.
I also saw Kelly (pseudonym) today. Kelly was my social worker when I was a baby, because when I was a baby I was cared at Kaiser before being transferred to Stanford. She was so shocked to see me as a teenager! She even said I was handsome (I’m not but that was flattering). After hearing about my transplant, she said she didn’t know. Apparently it wasn’t written on my record, which was weird.
The doctor was also shocked to see me! He said “No way, you look so old!” He also didn’t know about the transplant, so it was obviously not on there. He said he wanted to try to stop Gleevec, the chemotherapy drug that controls my eosinophils, because my hypereosinophilic syndrome was gone. If I get off the drug, will the disease come back?
The doctor is retiring in 6 months, so we want to be sure to have the test trial before he retires. Another doctor that doesn’t know my history of my eosinophils probably won’t be as good as he is. The doctor will call my post transplant team at Stanford.
I had a doctor’s appointment at Lucile Packard Children’s Hospital today.
We left Pleasanton at 8 AM. We arrived at Stanford just in time for my 9:45 AM appointment. We checked vitals first, then I had my echo done. An echo is short for an echocardiogram, which is a test that takes pictures of your heart. It’s like an ultrasound for the heart.
After the echo, we went to the clinic. The clinic is the part of the appointment when you talk to your doctors. Everything is great. My sneezing is okay. I don’t think I’m sick.
My Prograf levels are also great. The level is 6.3, and my goal is between 6 and 8. I’m taking 1 mg of Prograf in the morning and 0.5 mg of Prograf in the evening.
In translation, my immunosuppressants are doing their job well. My immunosuppressants also have a range, and that range tells us how much immunosuppressants are presents in my body right now. My blood is checked regularly because we want that range to fluctuate.
I also noticed that I haven’t had leg pain for a while now. Leg pain refers to when I have pain in my calves. Before my heart transplant, my leg pain was so bad that I had to stay at home for a month.
My psychiatrist also came in. If you remember, in the Ronald McDonald House I had a psychiatrist that I had to meet with every Friday for 5 weeks (see May 22, 2018). Well, that psychiatrist graduated, so I have a new one. Anyways, I told her that everything has gotten better since the first day of school.
The doctors said I could go to transplant camp over the summer. If you remember the transplant reunion (see August 11, 2018), a girl mentioned transplant camp.
Anyways, after my appointment, I ate at the hospital cafeteria. The hospital also opened their gift shop and I bought a jacket there. Afterwards, I went home.
My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.
Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.
I’m so sad.
Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.
The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?
Yet.. yet I can’t survive without it. That makes me sad.
I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?
I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!
And it’s not working!!!
Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.
Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.
I’m also nervous about starting the medication.
When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.
Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.
It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.
So what am I going to do about it?
In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.
For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.
The future of my body depends on these 4 months between today and March. I need to gain weight.
(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.