January 16, 2019

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.

August 26, 2019 – 504 Plan

Another Monday, another school week. Ewwww.

Anyways, I had my 504 plan today. My last 504 plan was on October 4, 2018, so I was surprised that this one was so early in the school year. Also, the school didn’t inform me that my 504 plan was today?!? I just found out yesterday when my mom and I were fighting when she yelled “Y’know, why don’t you just not come to the 504 plan tomorrow!”

The reason I have a 504 plan and not an IEP is because a 504 plan is added modifications to your academics while an IEP is a completely customized education. 

As expected, not all my teachers were there. Of the group attending was my AP Psychology teacher, US History teacher, vice-principal, school nurse, and school counselor. 

So it was the same old, same old. Just the usual stuff:

  • Flexibility for missed assignments and schoolwork for days missed
  • Unlimited bathroom trips
  • Ability to change seats if students nearby are coughing or sick
  • Sunscreen applied regularly stay out of sun

Last year was the tricky year. Since I was so fresh out of transplant, I was so sensitive to diseases and getting sick. When ever someone coughed in the classroom, I would avoid them like the bubonic plague.

I don’t anticipate this year to be as tricky. I feel that it’s going to be easier, and that I have a lot more freedom.

What’s different about this year is that I have a full schedule instead of the five periods I attended last year (10th grade) and ninth grade (the grade I was in heart failure). 

Pre-transplant I could take my medications roughly in the morning and evening, but now my meds require to be timely. I take my morning meds in first period (8:45 AM), but no one minds because everyone minds their own business.

I mean, who would be like “Oh my god, he takes meds! Hahaha!” High school kids are mean, but they’re not THAT mean. I feel like the only people who would say that are people who don’t have lives.

March 6, 2020 – I’m going to online school

Hi guys, so sorry for the inactivity on my blog.

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’m starting the withdrawal process today.