May 15, 2018

I’m leaving the hospital Finally!

First, I took a shower, and the water washed off most of my dried blood.

It was nice leaving that torturous place. I went directly to the Ronald McDonald House after getting out of the hospital.

The guy at the reception desk gave me a tour of the House. There’s a community kitchen, but we have our own individual pantry and refrigerator section. There’s also a community pantry, refrigerator, and freezer. The Ronald McDonald House has several playrooms, a gym, a backyard playground, and a community dining room. The Ronald McDonald House also has a shuttle between them and the hospital.

My room was nice. It had 2 beds, and a bathroom. I can’t help but think it’s not that great for long stay housing. It’s more like a hotel room than anything.

The Ronald McDonald House was serving dinner downstairs today. This usually happens. Nonprofits usually come to the Ronald McDonald House and make dinner for families that stay here.

I ate outside. I was sitting next to a family, and I overheard their conversation. Their son was 5 years old, but had 3 heart transplants!

3??? I can barely survive this one. I left and decided to eat inside. That story made me sad.

While I was eating dinner, my heart suddenly started pounding. I instantly got mad. I’m angry with the world.

I told my Mom, “I hate this place.” I want to go home, not stay in a hotel for 3 months!

My Mom told me not to be angry. I’m lucky I got my heart in the first place. I only waited for 2 weeks, not 6 years.

I can’t be happy about this situation. I mean, this is what I’ve been working for??? To stay in a hotel room for 3 months???

May 27, 2018

My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!

And can you blame me about complaining a lot? In 1 year I:

  • learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
  • learned that my heart was failing
  • my normal life was taken away
  • got my first IV
  • was considered for heart transplant
  • missed 1/2 my school year
  • In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
  • considered transplant by doctors
  • had 3 hospital stays in 3 months in a row
  • considered dropping out of school
  • was listed for transplant
  • got a transplant 2 weeks after listing
  • suffered recovery
  • still suffering recovery

All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.

Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.

Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.

September 20, 2018

Nicole died today.

Nicole is a 10 year old girl battling heart failure and she’s been in the hospital since May. She was born with a non functioning right artery. As a result, she needed to replace her artery with a mechanical one. As she grows up, her heart grows too and she needs her artery replaced, thus this being her 5th open heart surgery.

In summary of her hospital stay, she didn’t wake up immediately from surgery. After she woke up, her kidneys started to fail, She had to be placed on dialysis. After that she had a stroke. The left side of her was completely paralyzed. As a last option, she was placed on the heart transplant list. She was monitored relentlessly by the doctors, but after her code blue today she didn’t make it. A code blue is an emergency situation announced in a hospital of a person in cardiac arrest.

Nicole’s dad owned multiple restaurant chains. At age 18, he built his own restaurant with his own hands. When Nicole asked him to be with her, he sold his restaurant chains and moved in to her city. Nicole’s sister suffered too. When she was offered to stay with her grandparents she said, “No. I want to be with Nicole.” Nicole was only 10, but she already had a boyfriend. He was the son of the pastor. Nicole was a devout Christian. Everyone in her town knew her, and her town’s church group stood in a circle for an hour praying to her. Tw days before today Nicole changed her name to Nicole Faith. The first thing her dad posted on FaceBook was “Nicole got her wings today”.

The worst my Mom and I thought Nicole would be is half crippled. We never expected her to pass. Next time at Stanford, Nicole won’t be in her room. She’ll be in a casket. In her room will be another patient.

You can help. 6,775 people die each day in the United States. If every one of them was an organ donor, Nicole would’ve been saved. Please register to become an organ donor. An inconvenience of a few clicks can save someone else’s life.

Follow the steps, and you can save another Nicole.

October 2, 2018

I contacted Amy. (see August 24, 2018). It relates to my first day of school (August 13, 2018) question: How do I transition back to being normal?

Hi Amy, I am the 10th grader with the heart transplant.

I just wanted to ask you a personal question. How did you transition back into normal life after getting out of the hospital?

No one understands what I’ve been through. After I tell my classmates, all I get is “cool story” or “Wow! I didn’t know that” or “that’s awesome”.

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.

Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Today, in the Pink Dot Club, we talked about a girl named Nicole who died waiting for a heart transplant. Except we talked about her for 1 minute. Only about half the club was listening. The next 20 minutes we talked about Honors English and the teacher for that class. Everyone was listening.