April 28, 2018

Shoot me. Please.

Everything is painful. What is this in my neck, an IV? That’s painful. What is this in my hand? It’s popping out of the skin like a bulge. I… what??? Actual STAPLES inside me. I use staples to turn in my homework, not seal up a big HOLE.

I feel like I’m going to die. My heart is thudding so loud it might pop out of my chest. What is this? I can’t hear anything because my heart is pounding so loud.

Why are there tubes inside of me? There’s actually tubes inside my chest. They’re sucking excess blood from inside my chest.

I’m so uncomfortable. I’m sweating all over. Why am I so hot? I can’t move and change a position since I’m so sore, which I don’t understand? Before I went into the surgery I could at least sit up.

There’s so much plastic inside me: the chest tubes, IVs, and monitors. There’s also a lot of stuff connected to me to. There’s also bruises on my hands and arms. There’s also a big pole with tons of machines onto it. I guess that’s where all the medications are.

They want to remove my breathing tube. Did I not mention there’s a tube inside my throat? Yeah there’s a tube inside my throat. They want to remove my breathing tube while I’m conscious. And they did. They just yanked it out like tug a rope. At least I can eat and drink now.

There’s also a catheter in my urethra. So… yeah.

I’m heavily drugged, so at least I’m happy about that. I mean they’re giving me pain medication which is great (even though I still feel awful).

Was transplant right for me? Was this a mistake?

I’m so stressed. Nothing prepared me for this.

April 29, 2018

I sat down for the first time today.

I’ve been in bed all day yesterday. Physical therapy wants me to be as active as possible. They held the tubes and lines so I could walk without anything in my way.

I was sweating so much that I’m glad to be off the bed. What I didn’t expect was how sore I was. I swear, I had the flexibility as the tin man.

My heart is horrible. My heart suffered at this tiny shred of exercise. When I was helped up, my heart was all THUD, THUD, THUD. It did not like this.

It was so painful getting up. My heart and soreness combined with my anxiety of tripping over the wires and having all the IVs pulled out of me was awful. Once I was on the chair, I was okay.

Turns out I sweat a lot on the chair too! As soon as I sat down, I immediately felt hot.

Well, at least I’m progressing fast. I got my breathing tube removed and I had my first physical therapy session today.

Skip to 00:15 to see the tube removed

April 30, 2018

3rd day post transplant!

Oh I ate breakfast today! Which is great. Since my breathing tube is out, I have the ability to eat. The fact that I’m eating is telling me that my appetite is coming back.

Also, my grandma visited me today. It was nice seeing her.

The physical therapists came again today.

It’s so much pain. And so uncomfortable. There’s so much stuff inside me. These tubes… the hot and cold… the palpitations.

I don’t know how I’ll survive like this. I can’t survive like this. Even if it’s only for one week.

When will this stop?

Was transplant even right for me? This heart feels worse than my damaged heart. What if this was a mistake, and everything is screwed up for me?

I can’t help but feel so sad. Everyone in my grade is preparing for finals. I want to be preparing for finals. I want to study until 1 AM and stressed. I want to be at school. I want to be normal!

Why did I have to be the one to have this super rare disease! I can’t… why??? Why ME!

May 5, 2018

A PICC Line was installed today.

A PICC Line is like a more permanent IV. They put it inside of me the same way they put in an IV: with a needle. However, my Mom and I had to wear caps and masks while they did it. The extra protection has something to do with preventing infection.

They took out the IV in my neck. Or was it a blood pressure monitor? Either way I’m glad it’s out. It’s not the most comfortable thing in the world.

They also replaced the gauze and tape covering my chest tube holes. It’s closing nicely.

A big thing: I transferred from ICU (Intensive Care Unit) to PCU (Patient Care Unit) today. The ICU is mainly where you stay if you’re in critical condition and need constant monitoring. The PCU is where you stay if you’re in better condition and have more privacy.

For me, the PCU is my transition phase between surgery and discharge from the hospital. I can’t wait to be discharged from the hospital (see May 15, 2018). Even though I won’t be going home immediately after, I still can’t wait to get discharged.

May 7, 2018

They told me if I take this sleeping medication I would fall asleep. It’s 2 AM.

I should be happy with my heart transplant. Not everyone even gets this chance. But I’m not happy.

I want to end my pain. I did not expect this pain. At all.

I can’t sleep because I’m extremely hot. So hot I’m sweating.

I’m experiencing a hot and cold sensation. My circulation is crazy because of my new heart. When I lie down, I feel like I just entered the sauna. Then the heat just keeps on increasing until it’s unbearable. When I pull my blankets off me, I get super cold. It’s like I traveled from the sauna to an 5 AM freezing outdoor swimming pool.

Sitting up isn’t an easy task. I have to squeeze a pillow around my incision area, and do a crunch. Especially being so sore, it takes a lot of effort.

Even when I do catch a break with sleep, I keep getting woken up from the machines beeping, the nurse checking blood pressure, sudden need to use the restroom, and most often the unbearable heat.

At least when the sun is up I have things to do. I can eat, watch movies, talk to my Mom. and… well that’s it. I’m in too much pain to do any homework or work on anything else. I don’t have any video games to play, and the video games in my room are broken. But at least I have something to do!

In the hospital, time is against you. An hour is a day, a day is a month, and a month is a year. If I could somehow speed up time, I would.

At night I usually just stare into the darkness and think. I’ve been having a lot of dark thoughts from all the pain. I’m not suicidal, but I just want the pain to end.

Why me? Why did I have to get this heart transplant? Why did I have to get a heart transplant in the first place?

Was a heart transplant the right choice? I don’t think it is. My new heart is way worse than my old heart. What if I stay this way forever? Then what will happen? I can’t live like this.

May 12, 2018

I hate the night.

The night is horrible. I can’t sleep so I just stay up and stare into the wall.

Before I went to slept I talked to a nurse. She told me that it was normal for me to be sad. She took care of other heart transplant people and said they were sad after transplant too.

She told me all the sensations were normal. The heart pounding, hot and cold, and inability to sleep was normal.  For the heart pounding my heart was adjusting to my new body. For my hot and cold sensations, my circulation is going crazy because my heart’s pumping abnormally.

Then why would the doctors not tell me about this in the transplant education? Last year, before I was put on the transplant list, I was educated about everything of transplant by a doctor. Yet they never said anything about heart pounding or hot and cold sensations.

I expected pain. I expected a giant cut down my chest. I expected being in the hospital for a long time. I did not expect my heart and pounding. I did not expect my hot and cold sensations. I did not expect an emotional rollercoaster.

The nurse told me about an orphan baby. An orphan had a heart transplant at this hospital. Since he had no parents to take care of him, she would cradle him in her breaks.

I can’t imagine being here without my Mom. Some children’s parents don’t stay with them at the hospital. What kind of parents do that? I couldn’t imagine choosing work over my child in the hospital.

Now I know that my sensations are normal. Then when does it start to go away?

Does the knowledge that my sensations are normal help me? Yes. I’ve been questioning whether transplant was right for me, so at least I know I’m not dying.

May 13, 2018

They told me I would leave the hospital today or tomorrow!

Finally! Staying in the hospital is horrible.

However, I wouldn’t leave to go home (which suacks). I would leave to the Ronald McDonald House. Yes, Ronald McDonald. Ronald McDonald of McDonald’s, the fast food chain.

McDonald’s has a charity that sets up housing near hospitals for families with their children in critical care. Hence, the Ronald McDonald House. There’s tons of them around the United States.

I am so glad I’m leaving. Every since day one of transplant, I’ve been dreaming of getting out of here. Pain is really, truly, honestly horrible. Is leaving the hospital going to get rid of my pain? Hopefully!

Today is also Mother’s Day. I’m gonna say my heart transplant was the biggest present for my Mom. When I was put on the transplant list, she had so much anxiety. She started taking pills. Thank God I was only on the list for 2 weeks!

Oky, so I’m not leaving today. I’ll leave tomorrow. That’s fine.

The doctor came in to talk to me about my staples. During rounds, I mentioned that before I left the hospital I want my staples taken out.

The doctor told me I would either have to wait until the next biopsy to take out my staples, or take them out now when I’m conscious.

I choose to take them out now.

They took a stapler remover, and used it on a human person. I’ll repeat, they used a STAPLER REMOVER. The staple removers you use to get out the staples in your homework packet, and used it on human flesh.

It was… painful.

What was surprising was no blood came out. The nurse gave me a hot pack to put over my chest.

Even though it was painful, I’m glad they took the staples out. I had a lot of anxiety over the staples because I was afraid that they would just pop out and my chest would just open.

Later in the day the nurses also took out my PICC line (see May 5, 2018). I think a PICC line is like an IV, but larger. Removing the tape made me really anxious, but it didn’t hurt to take out the PICC line. I hate my imagination.

The PICC line was at least a foot long! That was in me? That was in my veins? Oof.

Now all I have is my heart monitor. I ain’t got no tubes, poles, or even IVs. That’s awesome.

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 6, 2018

Noah came to Stanford this weekend. Noah is a 10 year old boy I met at the Ronald McDonald house that was receiving an experimental drug for his stomach cancer. Nolan and I send each other gifts (see August 7, 2018).

After school, my mom and I drove from Pleasanton to Stanford. We met Noah at a seafood restaurant. His mom was so excited to see me. Noah had to draw a lot of blood so he was pretty tired. He almost fell asleep while eating his food.

His mom told us that Noah’s tumor has shrunk so much, that they might surgically remove it. However, they told me that the medication might work so well that the tumor might go away on its own.

They said that the care at the Stanford hospital was exceptional. At Phoenix Children’s Hospital the nurses didn’t give great care. The tumor was on Noah’s back, so his parents explained not to touch his back. However when he went in for his CT scan, the nurses grabbed him on his back. Noah screamed out in pain. At Stanford’s hospital the nurses and doctors spent a half hour trying to work out the logistics for the CT scan. Where the pillow would go, where to position his back, how to transfer him on the bed. This is because the nurses at Stanford have to go through 7 rounds of interviews before being hired. Their care is exceptional.

After eating, we went to a Starbucks restaurant at Town & Village, a plaza in Palo Alto. Noah also got gelato from a nearby shop. Noah is doing great at his elementary school. He skipped a grade so he’s in 4th grade instead of 3rd. His teacher is actually a friend of his mom. His mom explained to the teacher about what happened. He has special accommodations, for example, he doesn’t participate in PE. Instead, he helps the teacher carry basketballs, We talked to his mom about a 504 plan.

Noah’s parents said it was really lucky that I had my Mom. My Mom cares about me a lot, that’s why she brought me here today.

After saying goodbye, we drove back home.

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.