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.
My English teacher visited me today. She’s my Honors English teacher. To be clear, she’s the English teacher that failed me.
So when I was picking classes in 8th grade I picked Honors English because honors (I wanted to be smart alright). I had NO idea I would’ve been in and out of the hospital for my entire Freshman year at High School. I was set back in her class, and she gave me a D. What kind of English teacher fails their student then visits them at the hospital?
She gave me cards that my class made for me. If I’m going to be honest, I don’t care about the cards at all. I know that the class just made it in fake kindness. They’ll feel bad for a moment, do their “kind” part, then move on.
Sorry, maybe I shouldn’t say that. I’m just so angry! I’m in all this pain everyday. I… I’m struggling to keep my sanity intact.
Maybe I don’t even deserve the cards. What have I done? Complain all day thinking the world was about me? What was I expecting?
Reality is harsh. Out of the 50 million people that could’ve had hypereosinophilia, it was ME. What awesome luck.
If it wasn’t because of that I could’ve had a way better life. I could’ve been a soccer player, been way taller than 5’3”, not had any blood draws in my entire life, and been normal. I COULD’VE BEEN AN ATHLETE!
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.
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.
I just heard of his death today. My mom told me in the car. But he didn’t die today, he died on November 7, 2018.
I had to scroll down on his Facebook page, Brayden’s Brave Heart, to find the date of his death, and it broke my heart.
Even after his death, his Mom posts daily with pictures of Brayden and reminiscing about his time alive. And not only that, Brayden has impacted so many others. Did you know that they found a stone in Hawaii with #BraydensBraveHeart written on it?
I used Brayden in my YouTube video as an example of why you should donate. I made him a prime example of the success of organ donation.
All this time, I’ve been advocating that life will always be better after transplant. I’ve been doing that even though my doctors always emphasized “transplant is a treatment, not a cure.”
Brayden deserves better. He deserved to live.
He’s fought so hard to be alive. Why is life so unfair.
Brayden was always impacting lives. Even after death, he’ll be impacting lives. He’s impacted mine. 🙏
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