I have so much pain. The doctors lied to me. They said that I would have tons of energy after transplant. That’s a lie. I feel horrible. There’s pain everyday. There’s pain always.
Is my heart okay? Was a transplant right for me? This heart works worse than my damaged heart. What if all this pain was for nothing?
This heart is always pounding. Every second I’m awake I can feel and hear it. It’s always THUD, THUD, THUD.
I have anxiety because of the heart transplant. I have never had anxiety as bad as this before transplant. What if this heart stops pounding? My staples feel like they’re going to pop and my chest is going to open up.
I HATE THIS POLE. Why is there such a big pole next to me! There’s tons of cords coming from my body. I always get myself tangled. There’s more plastic in me than the Pacific Ocean.
Why the hot and cold sensations? One moment I’m hot, the next moment I’m cold. I can’t sleep because of this (and also the pain). I lie down and in minutes I start sweating. I sit up and I’m instantly freezing.
Physical therapy is the worst. They want me to walk around the unit three times a day. I can barely sit, not even walk. When I walk I have to constantly take breaks. I also have to concentrate to not trip and fall over my lines connected to my IVs, which sucks.
I try to distract myself from the horribleness of this situation by watching TV. Nothing can distract myself from the pain. It’s always nagging and tugging at me. Like, why?
I’m so sad. I can’t explain how sad I am. Everything seems hopeless. This heart transplant was supposed to be my treatment, but it’s not working. All it’s brought was pain.
They stopped dripping medication for my kidneys. Instead, they’ll just insert medications throughout the day.
I can finally walk around without dragging that big stupid pole. Now I can walk outside my unit and downstairs. Walking is a lot more tiring dragging the pole around.
There was a festival today on the 3rd floor. For some reason, Tearaway, a video game, wants to advertise their product at a children’s hospital.
There was a PS4 demo, which was cool. With the PS4, they demonstrated VR. I couldn’t bend my neck around for the VR because of my neck staples. I don’t want to pull at them since they’re practically loose.
They gave me a water bottle, lunch box (like I’d be going to school soon. Ha!), and a blanket.
I watched Mission Impossible all day. I found that watching movies is a great way to distract from the pain.
At the Lucile Packard Stanford Children’s Hospital there’s a Family Resource Center, where you can rent movies and DVD players. I rented so many movies: The Lord of the Rings trilogy, The Captain America series, The Avengers series, Matilda, and Tom & Jerry. Now I’m moving onto the Mission Impossible series.
For my physical therapy, I walked downstairs to the cafeteria. I bought food at the cafeteria, and ate food outstairs. I can’t eat inside because I’m required to wear a mask in the hospital at all times. I don’t want to go back to my gloomy room and eat. I ate outside, but I’m not supposed to be outside, so I had to find creative ways to sit in the shade.
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
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.
The doctors told me the reason I can’t walk much is because I have weak lung power.
It’s NOT lung power. It’s endurance.
So what if I get short of breath when I start walking? Everyone gets short of breath when they start jogging. That’s what I’m comparing walking to: jogging. Right now, walking feels like jogging. Your heart beats louder, you get short of breath, and you want to stop. The only difference is my heart rate doesn’t increase.
Before transplant I felt the same thing while running that I’m feeling now while walking. Before transplant, when I ran, my heart beats louder, and I got SUPER short of breath. In fact, I got so out of breath and my heart beat so loud I had to stop. It’s the same thing now (well, actually it’s a milder version), only that now it’s walking. See? It’s about endurance. If I had more endurance I’d still be feeling short of breath, but only during exercise.
My cold was completely gone when I woke up today. Thank you God.
It was on time too. I had a physical therapy appointment today. I take physical therapy because after my surgery everything is sore. I have to readjust to my new heart and become more flexible. After heart transplant, even sitting down was hard.
My physical therapist is pregnant and will be delivering in a month, so that’s pretty cool. I’ll get another physical therapist when she’s on maternity leave.