Despite finding a great hospital and doctor, the road to recovery was not easy. Although they had discovered the problem and began treating it at Columbia, they still needed to help me get over the horrible mistakes the other hospital made. I remember taking oatmeal baths all the time to get over the incredible itching from the allergic reaction. Even once the rash started to subside, my skin was still all dried out and itchy. That one symptom itself took over three weeks to fully heal.
The next thing I had to deal with was learning how to eat and walk again. After weeks in a hospital bed, too weak to perform most basic functions, those tasks were harder than it would seem. Eating was by far the most frustrating aspect of recovery. I am not the biggest eater and I’m pretty picky in what I like. But the things I eat, I feel like I can’t live without. For instance, I probably eat pizza at least three times a week. I love pasta, pickles, and candy as well. You can see in the picture from the last post a bag of candy corn sitting right next to me on the bed. In the hospital, though, they really only let me eat a liquid diet and all my calorie intake was ingested through my nose straight into my stomach. Granted I’d rather stick a tube through my nose than drink that Ensure crap, but it was still a horrific experience. Slowly my doctor let me progress towards solids and I eventually began to eat normal food again.
My first taste of solid foods was not a pleasant one unfortunately. My brother worked at a pizza store that summer and would bring leftover pies and food for my family and the nurses after his shift. His manager was very concerned about me and would give my brother whatever leftovers they had to bring to the hospital. Nightly I would stare in envy as my family and the hospital staff ate pizza, fries, and calzones. When they finally gave me permission to eat solids, I couldn’t hold back. That night my brother brought mushroom pizza, and with a smile on my face I devoured two slices. It was amazing…for five minutes. Then, everything I ate was on the floor, being cleaned up by the people who would’ve actually enjoyed those slices if not for me.
After a few days adjusting to the basic food groups of sugar, cereal, candy, and soda, I was ready to take my first walk around the hospital. For a few weeks, I rarely walked further than a few feet from my bed and the most exercise I did was turning the pages on Archie comics. But with a gallon of high fructose corn syrup in me, I was energized to take my first walk in weeks. I got out of bed, walked out of the room, and began exploring my surroundings. I felt great. I even went up and down a flight of stairs (not an easy task when you have to haul along your IV pole). I felt strong, energized, and healthy. I went to sleep that night ready to take another stroll tomorrow, eventually leading to the walk out of the hospital. But when I woke up, I wasn’t so enthusiastic anymore. I was sore, tired, and in pain. I had pushed myself too far again and this time I would remain in bed for another week before I could try walking around once more.
When I finally got home, things weren’t that much better. I had to put a tube up my nose a few times a day so I could ingest the right amount of calories. I had to take tons of pills, some temporarily and some I still take to this day. And probably the worst part, I had to start injecting myself in the leg with heparin to deal with portal vein thrombosis. They discovered blood clots in my body through a routine CAT scan and luckily caught it early. Still, I had to inject myself daily for the next four years until the clots finally began to subside.
For ten summers, I never really thought about how much that one hospital stay truly defined my disease. I guess I never really needed to since I felt better for so long after. I think these last posts have been as helpful to me as they might have been informative to you. In all honesty, it’s pretty amazing I’ve been this healthy for the last ten years after such a traumatic experience back then. After all, the liver team fought for me to get transplanted right away back then. It was definitely a horrific summer and perhaps an even harder recovery. But knowing I got through that experience gives me hope and strength to battle my transplant. I’m not that different than I was ten years ago. I’m skinny, I’m short, and I’m not that healthy. And if I overcame all that back when I was 14, what’s gonna stop me from overcoming it now?
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