03/16/2013 11:42 pm ET

'The Hospital Is Home'

This is a teen-written article from our friends at Teenink.com.

By sbear406

Lying on the warm operating table, everything was out of my control. I stared up at the room’s eerie fluorescent lights and put a roadblock up against every thought that tried to creep its way into my mind. In these final moments of consciousness, I realized that my life was now in the hands of people who were close to total strangers, however, for some odd reason, I’d never felt more secure.

For as far back as I can remember, I’ve never minded the hospital. That doesn’t mean that I ever wanted to be there, but it’s never bothered me. It was my sister who first expressed to me that she didn’t understand this. She told me that hospitals freaked her out and that she hated being in them. I guess I can understand why. Hospitals are where people go when they’re incredibly ill. They’re where no one wants to ever have to be, but to me, hospitals are a place of healing. They offer a hope of getting better.

The first time I was hospitalized was in fifth grade for cholangitis, an infection of the common bile duct, which is the tube that carries bile from the liver to the gallbladder and intestines. For this, I missed a week of school and my two best friends at the time, Bridget and Mariah, came to visit me in the hospital. They brought me different gifts and a giant card signed by everyone in my class. I remember being excited to read the card because the boy I had a crush on at the time, Matt, had signed it. It was a big deal. For the remainder of my stay at the hospital, I tried to catch up on homework, watched plenty of movies, and took part in different organized Halloween activities since it was late October. I wasn’t at all traumatized by this experience. In fact, it had been a fairly pleasant sort of vacation from life. My only concern was getting better, and soon enough, I did.

During the beginning of seventh grade I wasn’t feeling well so I went to the doctor and had some blood tests done. I was sitting on the couch at home when the doctors called to inform my mom that my numbers were out of whack and that they wanted to admit me to the hospital. I recall my mom tearing up as she passed the news onto me, and as always, I didn’t understand why she had to cry. It’s not like I was receiving a death sentence; I had to go to the hospital to get better. Everything would be fine. I packed up some belongings I thought I’d need for the week and we headed to the Morristown Memorial Children’s Hospital. I didn’t feel overly anxious returning to the hospital. I knew the doctors would figure out what was wrong with me, and in the meantime, I could use a quick break from the constant uncertainty of reality.

It was determined that I once again had cholangitis, and over the next week, I got better, but this time was a bit different. After this hospitalization, my doctors decided that I should be evaluated for a transplant before my health got any worse. It was better to get it done now, while I was still fairly healthy, than to wait until my health had completely deteriorated.

Back at school, everyone asked if I was okay, and what I was in the hospital for. I simply told them I had a problem with my stomach. I didn’t think they needed to know the details. Either way, people started noticing it was more than that. One boy in particular was asking me about my eye and skin color. They were jaundiced, a sign of liver failure, and he wanted to know why they were that way. I told him that they always got like that when I was sick, and nothing more.

While my parents knew that a transplant was in store for me, I was still completely oblivious to the seriousness of my condition. For my first transplant consultation at Mount Sinai Hospital in New York City, I didn’t know what we were going for, however I didn’t question anything. I’d been to the hospital plenty of times before. It was probably just another random appointment with another random doctor.

As we walked through the hospital, I noticed we were approaching a set of metal doors with a sign above them saying something about transplantation. I immediately turned to my parents, confused, and declared, “I’m not getting a transplant.” But I was wrong, and soon enough, I figured that out.

Due to the longer wait for organs in the tri-state area, my parents brought me to Jackson Memorial Hospital in Florida, a hospital with a well-regarded transplant center. After consultations with a handful of different doctors, I was told that I was a prime candidate for transplantation, and was put on the official UNOS (United Network of Organ Sharing) waiting list. One short month later, an organ match turned up for me.

To be honest, I feel like I was sort of blindsided by the whole experience. I had always known that I had some minor medical issues, and took a few pills everyday to regulate them, but that was all. If you asked me what my condition was, I’d be able to tell you that I was born with Biliary Atresia as a baby, however I had thought the main problem had been fixed after I underwent a Kasai Procedure at a few months old. It soon began to seem like I had control over so little in my life. Everything was out of my hands, and there was nothing I could do about it. I didn’t know why this was happening to me, but I never bothered questioning it in depth. I figured the one thing I could control was my thoughts and outlook on the entire situation. I wasn’t going to start pitying myself. There was no need for that, and either way, that seemed incredibly selfish and inappropriate to do so when I was about to receive the gift of life.

I hated that I had no control over the fact that someone was going to have to die in order for me to live, or who it was that was going to die. My donor ended up being a nine-year old boy from Louisiana, and I’m still bothered by this today. I don’t think there’s anything that made me more worthy of life than him. I feel constantly plagued by the thought that he should be the one here today, not me, and by the fact that he was so young, younger than I was at the time. Because of him, I’m able to grow up and experience things he never will. It seems unfair to me. Unfortunately, I’ll never be able to change or switch the fates of my donor or myself, so the best thing I can do is find a way to lead a fulfilling, meaningful life for the both of us.

I’m not going to lie and say I felt one hundred percent confident that I was going to have a seamlessly successful surgery. In the prior month, I had worried about the possibility of dying during surgery, or even scarier, waking up during it. I always wanted to, but never asked my doctors about the patient survival rates of liver transplants. I assume this was because I was afraid of what their answer might be, so instead, I would look up the statistics in private online and successfully freak myself out with sketchy, unreliable sources. I didn’t want to become a statistic, but even with my doubts, I still went into surgery feeling hopeful. In the final moments of consciousness, I knew that I was about to lose all control and I felt comfortable knowing that I was now in the hands of highly trained professionals. I no longer had to worry about what was going to happen to me, or when I was going to get sick again. All I had to do was go to sleep and let my surgeons take over. I felt that someone was finally fighting back for me. Six hours later, after my surgery was complete, I woke up to my parents telling me that everything went exceedingly well, saying the surgeons called my operation a “drive by transplant.”

My final, and most recent hospitalization to date was during the summer of sophomore year in high school. I was in a five-day acting camp at UMass Amherst when on the fourth day, I didn’t feel right. Something was wrong and I knew it. I had the chills, felt nauseous, and dizzy. My camp counselor called my mom and I started feeling progressively worse as I waited for her to arrive. I didn’t know why this was happening to me. I had been feeling fine a day ago, and no one else at camp was sick. The timing couldn’t have been any more inconvenient.

My mom checked us into a hotel with the hope that all I needed was a good night’s sleep to feel better. She held me tight as I tried to fall asleep on the hotel bed, and eventually, I did. I woke up several hours later and nearly fainted trying to get out of bed to go to the bathroom. At that moment my mom decided I had to go to the hospital. Once there, they ran a bunch of tests on me, and as I had expected, things were off.

I ended up being medevac’d to Jackson Memorial Hospital. Besides being annoyed that I had to leave camp early, I didn’t mind having to go back to the hospital. I tried to focus on the positives, such as the fact that I got to fly in a private plane. Sure, it wasn’t under ideal conditions, but it was still cool. I knew once I got to Jackson I’d be greeted by familiar faces that would start working to get my health back on track. I liked the certainty of being in the hospital. For those few days the world would come to a stop for me and I wouldn’t have to worry about anything but getting better. I had to get better. There was no other option.

While the third time would’ve been a charm, I didn’t have cholangitis again, rather, I was infected with bacteria called Citrobacter Freundii, and no, that’s not a typo. In fact, I double- checked the spelling on Google. Fun, right? Don’t ask how I remember it. Anyways, I’ve been back to the hospital since, but not for an overnight stay.

For me, I feel like being at the hospital pauses reality. That’s not to say that the hospital isn’t real life; it’s just different. All of the uncertainty in the world comes to a halt. For once, I don’t have to do any worrying. My doctors take over the driver’s seat and I become the passenger in my own life. It’s up to them to fix things, and I’m happy to sit there while they do so.

While I think that my health is something that I’m able to manage to an extent with my immunosuppressant medication, I feel as though I’m abusing my body by taking it. My immune system knows that the liver inside of me isn’t mine, and it just wants to do its job and get rid of it, however, I have to prevent such natural instincts to fight against the “intruder” because it is obviously something that I need to keep. It’s all very paradoxical. I’m fighting my body against doing what it does best, protecting me from things that don’t belong. This medication also lowers my overall immune system. I’m much more susceptible to colds and infections because of my lower immune system, so I have to take extra precaution. I just hate that I’m going to be countering my body’s desire to protect me for the rest of my life with immunosuppressant medication in order to stay alive. I feel bad for it, and almost like I don’t want to be healthy because if I’m too healthy, my body will be stronger and more likely to reject my liver. It’s all just a bunch of thoughts in my head, but it gets me thinking, possibly too much.

My life hasn’t been the most predictable thing in the world, to date. For the most part, I was unaware of everything that was going to happen to me, and didn’t realize the repercussions it would have on me in more than just a physical way. Even today, I don’t know when I’m going to get sick again, but I know it’s going to happen, and I often anguish over what my next hospitalization will bring. Will it mean I have to get another transplant? Will I be able to get another transplant? Will I even want to get another transplant? And that’s just the beginning of the questions that race through my mind. But at the hospital, these questions remain at bay. I know that any uncertainty will be addressed and taken care of by my doctors. I’m sick already, so random sickness won’t be able to unexpectedly hit me like it did at camp, and I’m be surrounded by many doctors, so I feel secure in the idea that anything that goes wrong can be helped by them. From the point of entering the hospital, I know that I’ll be exiting healthier, better than I was before, and I believe that’s why I’ve always loved the hospital. It never lets me down.



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