Being a child is already not easy to comprehend. But being a child that has to make life-or-death choices is terrifying and traumatizing. At the age of 13,, one should be running around outside playing, making friends, and worrying about going to high school. But not me. I was either in school sitting in the classroom during recess or laid up in the hospital trying so hard to breathe enough air into my lungs to even be able to sit up in bed. Coping with the idea of death at such a young age is terrifying, especially when all you’re wanting to do is dream about the future.
While I was extremely hardheaded and stubborn, the part of myself I never showed was the terror that was eating me away on the inside. There were two terrors that ate away at me. The first one was stubborn, hardheaded, and refused to be put on the transplant list because I didn’t want to be slowed down. The other wanted to keep fighting like I had been doing my entire childhood. I was terrified of who and what I would become after the transplant. Would I still be the same stubborn and hardheaded child who, even though she was in so much pain, would still smile and tell anyone who asked that she was doing great? Would I still be that same child who was determined to participate in P.E. at school or told people that she’s got it when someone offers help?
I didn’t want to lose the strong-willed, hardheaded little girl everyone knew. I didn’t want to have to work on being someone new. But that came to a halt once I became too sick to even get up and go to school. But I went anyway. I sat in the classroom during morning prayer. That day, sitting there, I knew there was something wrong, more than the trouble I was already having. I could tell my body was shutting down and finally giving up on itself because what little weight I had left felt like it was starting to smother me. I knew there was something wrong, but I didn’t want to tell anyone.
As the morning went on, with my oxygen tank set to the highest level it could go to, I knew I had to get my teachers to call my mom. I couldn’t breathe anymore — I had nothing left to give. I started to feel my eyes wanting to roll to the back of my head. I could feel my body giving every little bit it had left while waiting for my mom to come and pick me up. All I wanted to do was cry from the pain. I was trying to cover it up, and I could mentally and physically feel my body giving up. That is when I knew that it was time to make the decision — do I travel back to New Orleans to see my CF doctor or do we go to Houston and finally see if I could make it to a transplant?
I remember my dad driving me to the emergency room, my mom on the phone with the transplant doctor saying “it’s time,” meaning it’s time to either get listed or let me go. It makes me sick to my stomach to say “to let me go,” because I was well aware of what was happening. I was aware and comprehended the depths at which death was trying to pull me through its door. But in the car, I remember crying because I couldn’t breathe anymore — every couple of breaths I was able to get in was just enough to keep me conscious, enough to keep me alive.
Everything started to become a blur, I barely knew where I was at or what was going on. Physically, I was at the point where the pain was subsiding, and I was becoming numb. I knew at that point that I would either have to be ready for a transplant or have to tell my baby brother goodbye and tell my parents that it would be OK to let me go because I knew they were hanging on by threads. I was terrified… I was terrified to let go. I was terrified to leave my baby brother by himself. I didn’t want to leave my parents grieving and hurt. I didn’t want to leave them hating God for taking me.
From the emergency room, I was put in an ambulance to be flown to Houston. Once we landed, I was sent to Texas Children’s Hospital. From there, it was a complete blur again. The last thing I remember before my transplant was the Friday before; I went into surgery to be put on what’s called ECMO and was listed on the bottom of the children’s transplant list. Between that Friday afternoon and Sunday at 4 a.m., I went from the bottom of the children’s transplant list to the very top of the adult list. I remember that Sunday at exactly 4 a.m., my mom’s phone rang and woke both of us up. Then she started crying, saying they found a pair of lungs for me. I was so excited I wished I could have jumped up and down, but also nothing scared me more. Mom came up to my bed crying tears of joy and that’s when a nurse came in saying that at 10 a.m., I would be wheeled back to the operating room.
All I could do was cry, from excitement and the fear that was starting to eat away at me. Now let me say, my fear wasn’t of death taking me from this earth or living a new life after transplant, but it was the fear of all the pain ahead of me being even worse than what I was already fighting. I didn’t know how freeing it was going to be to have lungs that weren’t drowning in infection. But when 10 a.m. came around, I remember telling my mom and dad not goodbye, but “see you later alligator.”
The next thing I remember is waking up on a ventilator, and my mom sleeping in the crappy hospital chair with a look of exhaustion on her face — but also a look of relief as she was finally able to sleep in some kind of peace. Yes, I was still in the 24-hour period after surgery when some major complication could arise. But I had never been happier in pain than that specific kind of pain. This new pain was very different from what I was used to in the past — it was a healing pain. I could feel life filling my body up again. I could see my color coming back; I didn’t look like this weird grayish color anymore. But the hardest part of the entire experience was the mental hit I took during all those years of illness — but I only realized it once I became an adult.
With being in and out of the hospital when I was younger, I never realized the isolation I was feeling wasn’t just isolation, but much more. It was depression, anxiety, and a fear not many will understand. It was also the constant anger towards myself for being what I thought was a burden.
Today, the anxiety has been the worst it has ever been, and it has kept me from going to the doctor when I recently got very sick. I feared being admitted to the hospital because it had been 12 years since I was last hospitalized. And because I didn’t reach out to my doctors, I became extremely sick. I did end up being hospitalized for a week and a day, trying to figure out what was wrong with me. I ended up with a collapsed lung and a chest tube in my back that didn’t just leave a physical impact on me but also a huge mental impact. The physical impact faded away, but the mental impact still has a hold on me today.
For a while, I slept every two to three days, out of fear of having a nightmare from when I was getting the chest tube put in. The nightmare puts me back in the room where they put the tube in; I was awake and remember that pain, which is what wakes me up while I’m asleep. That nightmare has gotten better, and I’m now able to have a much better sleeping habit.
But looking back, if I would have had the help — not only physically but also mentally — to teach me how to cope with major events like that, I don’t think I would have struggled as much as I have. The random nightmares that still tend to keep me up for two to three days at a time wear my body out. But also, over the years, I have learned on my own how to keep the nightmares at bay. I have also taught myself how to keep depression and anxiety from eating away at my dreams and my future.
Despite all the mental and physical struggles I still face, I still wake up with a smile on my face, a hope for my future, and my fearless faith in God that has kept me alive since day one.
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