Today I went outside for the first time since surgery.
At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.
It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.
I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.
I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.
A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.
I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.
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.
Today was my appointment with the endocrinologist. I started seeing my endocrinologist when I was really young, after my first heart surgery at Stanford. Because of my heart failure, I didn’t have enough growth hormones in me. On the growth curve, I wasn’t catching up to my peers. Before transplant, 6x a week I would need to inject somatropin, a growth hormone, inside me.
I’m 5’3”. I’m at below average height, but at least I’m not at my projected 3’. The endocrinologist said that I could grow about one more inch.
In the same building was my cardiologist that urged me into transplant. He caught my Protein Losing Enteropathy, arrhythmia, and talked to my mom about transplant early in the year. My mom said he was a “miracle doctor,” and the reason I’m alive.
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