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.
We’re not supposed to go home. The doctors told me to always stay at the Ronald McDonald House because in case of an emergency, I need to be close to the hospital.
The thing is… I really hate the hospital and would feel way better at home. We’re not staying overnight! Only visiting. I don’t want to stay at the Ronald McDonald House, I want to stay at home. Home is where I want to be.
At home I stayed in my bed and watched TV. Now that’s comfortable. Although my hot and cold sensations might not be that comfortable (hot and cold = when I change sensations really fast).
For dinner I ate so much that my G-tube (Google it) started to hurt. If I stop using it for 6 months, I can permanently get it out.
At 10 PM, I had to leave and go back to the Ronald McDonald House. I wish I could stay at home forever.
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.
There’s a farmers market in Palo Alto today. This farmer’s market is at California Avenue. My mom and I decided to go. We bought local grown strawberries, homemade chips, handmade linguine, and Mexican food.
I had to sit down in the farmer’s market because of my heart pounding. After my heart transplant, I’ve been experiencing a heavy thumping from my heart after physical activity. It physically tires me, and it makes me uncomfortable enough for me to not barely focus on anything else. Since my heart was pounding, I didn’t eat much of my Mexican food I bought.
I woke up with a sore throat. In the past, a sore throat is a precursor to being sick. I CAN’T get sick. I’m only 2 months post heart transplant. When you’re sick, you’re more prone to infections. If I get an infection, I might contract cancer, and the only treatment is chemotherapy. Or infections could damage my new heart and I’ll need another heart.
Let me explain:
It’s really easy for me to get sick right now. Your immune system fights off colds, but it also fights foreign substances. When I got my heart transplant, the doctors created a black death for my immune system. That way my white blood cells can’t fight against my new heart.
After the black death, I also take immunosuppressants. Immunosuppressants are medications that suppress your immune system. We need to make sure the population of my white blood cells are controlled. With these immunosuppressants, I’m more vulnerable to infections.
I say right now because when you’re fresh out of transplant you’ll be more vulnerable than a year later. As your body gets more adjusted to your new organ, you can decrease your immunosuppressants and allow your immune system to become stronger. As I’m only 2 months post, I’m more vulnerable than I will be 6 months post.
If I get sick right now, I don’t know whether my immune system will be strong enough to fight it. If my immune system isn’t strong enough, I can get an infection. The infection can damage my heart, and worse case scenario make me need another one.
Another possibility is I get lymphoma. When you’re sick, you activate your lymph nodes to fight off infections. Lymphoma comes from those lymph nodes. If you’re to get cancer after heart transplant, it’ll be lymphoma. The only treatment for me is chemotherapy.
I watched a movie with my Mom today. We went to Redwood City Downtown to watch Avengers: Infinity War. When I was shortly out of my transplant surgery I was so uncomfortable. To ignore the pain I watched a lot of movie series. One of the movie series I watched was The Avengers.
Avengers: Infinity War is the 3rd movie in the Avengers series. I was so shocked about the ending. Since I watched a lot of Marvel movies, I expected the heroes to always be fine in the end.
After the movie my Mom and I ate at the Old Spaghetti Factory. The Old Spaghetti Factory is a restaurant next to the movie theater. However, since my heart was pounding I couldn’t eat much spaghetti. After my heart transplant, I’ve been experiencing my heart pounding after physical activity. It makes me so uncomfortable I can’t focus on something, not even eating.
That’s not good since I have a tube inside of me. The tube was used to put extra calories and nutrients inside me, but now I’m trying to survive without the tube. If I can’t eat, then this is an impossible mission.
Before transplant, I tried to get off the tube. However, it was really REALLY bad timing. At the time I tried to get off the tube was when I had protein losing enteropathy. My heart started to fail, so other parts of my body were affected. Protein losing enteropathy is when protein is lost by the body. Since I wasn’t getting extra protein, I started to become skinnier and my weight dropped. I needed to get back onto tube feeding.
I’ve been coughing a lot today. I think I’m sick. I don’t want to be sick. I don’t want to go back to the hospital (see June 3, 2018 Sick Pt. 1).
Tonight I was shivering. I was shivering yet hot at the same time. I think it’s because of my prednisone.
When we left the hospital, the doctors told us to call them anytime I needed. They gave us a binder with the hospital’s number on the cover. The number was available 24/7. My mom didn’t call the doctors because she was afraid that I would have to go back into the hospital for a common cold.
My Mom showed me a post on FaceBook by Camp Taylor. Camp Taylor is a non profit summer camp for kids with heart diseases. Camp Taylor posted about Nicole who’s having trouble after surgery (see September 20, 2018). Her blood pressure is too low and her heart rate is too high.