“As a child, I found hospitals quite amazing. They were these enormous labyrinths filled with interesting instruments, confusing hallways, and impressive-looking doctors and nurses walking around, quite literally saving lives. Unfortunately, this childlike wonder and amazement quickly subsided during my freshman year of high school.
During this time, I spent 6 months visiting hospitals, medical clinics, and rehab centers as I watched my mother fall ill with, battle, and eventually succumb to a terrible disease known as autoimmune vasculitis. After her death, I was only able to see hospitals as places where bad things occur, and I saw doctors as people who, while nice, ultimately couldn’t change the inevitability of death.
In my sophomore year, after turning 16, my family noticed I was growing sick. I lost 30 pounds, began sleeping over 14 hours a day, and suffered terrible stomach pains. During my school days, I would often skip lunch and go sit in the library just so I could find a place to close my eyes without people asking me, ‘Are you okay?’ After multiple visits to several doctors, I was devastated to learn I too had an autoimmune disease. At the time, I wasn’t able to differentiate between the disease that killed my mother and what I was being diagnosed with. I believed I would die in the same manner that took my mother, and it still terrifies me today.
I was diagnosed with autoimmune hepatitis. After I took the time to educate myself on the diseases, I learned my mother’s illness caused her immune system to attack her vascular system, whereas mine causes my body to attack my liver. Specifically, my bile ducts. This led to a secondary diagnosis of PSC (primary sclerosing cholangitis). I was told early on in my journey, one day, I would most likely need a liver transplant. If I’m honest with myself, I’m not sure I ever really accepted that fact… until I had no other option.
For 10 years after my diagnosis, I was able to keep moderately healthy. I found and developed a passion for entertainment, working in Orlando for the Walt Disney Company as a character performer. I loved my job, and every day, I was happy to go to work. Unfortunately, I still had to battle with regular episodes of my PSC, which would often cause my bile ducts to restrict, leading to upper-right quadrant abdominal pain, infection, and hospitalization. The highs of working and playing in The Most Magical Place On Earth were countered by the fear-filled days and nights in hospital beds.
After a particularly bad episode, one of my doctors approached me in my hospital bed and asked me if I was willing to accept a liver transplant if offered. I reflexively told him, ‘No, at least not yet.’ I was worried if my current liver could only last until I was 26, then my next one couldn’t last even that long. I wouldn’t accept it. This doctor sat down next to me and explained the risks if I waited, the benefits my youth and current health afforded me, and convinced me to accept the next offer I would get.
I just didn’t understand just how soon that offer might come. Surreal. This is the best way I can describe the day I received my transplant call. It was raining when I received my phone call, and when I hung up, I remember watching the raindrops fall down the window in streaks. I had a difficult time processing everything. I remember, but at the same time, I felt quite numb to it all. I created videos throughout the day, journaling my drive to the hospital and my subsequent wait in hopes I could watch them later and piece together what was happening.
It was about 8 hours until the donor’s liver arrived at the hospital. For much of this time, I tried to take care of all my last-minute details while I still had the ability. I messaged my roommates to prepare them for when I returned after my operation. I called my caregivers (my brother and grandmother) who live in Kentucky in hopes they could make it down in time. I called out from my work, messaged my graduate school professors, and posted on my social media all that was about to occur.
With each call, email, and text message, I felt a little better. I felt as though I was cleaning the house before a vacation so I would come home to a welcoming sight. When I say surreal, it was as if I was preparing to take my hands off the wheel that controlled my life and hand it to my doctors. I felt numb because after I made the decision to accept the liver transplant, I became like a passenger. Limited control of what was about to occur, and buckled in until the trip was over
My two best friends arrived shortly after I did at the hospital. They both stayed by my side until I was rolled into surgery, with the exception of a few moments where surgical prep demanded a little privacy. Shelby, my longest friend who I have known since childhood, was able to drive out to the airport, pick up my family, and bring them to the hospital just one hour after I went into surgery. When I awoke, I was happy to find I was surrounded by loved ones.
One of the last messages I sent to my brother before being rolled into surgery was asking him to take a few photos of me when I came out of the operating room, wires, IV, and all. I wanted to be able to see from where I was restarting, and I wanted to ensure this meant something. The first few days were a mix of discomfort, praying, and quiet anxiety. It was a step by step process. First, we need to ‘wake up’ my stomach. Before I could eat, I needed to pass gas. Those first 4 days without food were really quite awful. I never knew just how bad ‘hangry’ could get.
I was fortunate in the family and friends who showed up to support me. I had an entire team of support. My grandmother babied me. My brother motivated me as only a brother can to make me get up each day and start walking around the transplant floor (by providing a soft kick in the *ss), and my friends helped me stay sane, optimistic, and entertained. I am eternally indebted to all of them.
Days 5 through 10 were the hardest. The medications played with my head and my emotions. As they scaled back my pain killers, I had to endure some greater discomfort. The ‘no pain, no gain’ mantra echoed in my ears until I hated the entire idea of it, but it worked. I was admitted to the hospital for 15 days in total. I entered the hospital on October 1st and I walked out under my own power on October 15, 2019.
I think I benefited from my lack of over-analyzing my liver transplant prior to actually having one. I never put too much thought into how long my recovery would take. I was told recovery normally takes 3 months, but I had assumed it was for older patients who may have had other issues. I felt because I was relatively young and healthy, I would be fine. I never considered I wouldn’t fully recover, I just knew I had to, no matter how much time it took. Not to say I was patient. I asked my doctors how soon I could begin stretching, walking, and exercising within a month of the surgery.
Every clinic visit I attended, which in the beginning was twice a week, I was excited to see how my medications would slowly be scaled back and curious if my numbers were improving or if they suggested a change of medication. It was a roller coaster experience. Some weeks, my numbers would mysteriously rise and other weeks, my numbers would appear great, but then the side effects of the medications would cause challenges. My mood would change from one day to the next, and I ate everything in sight. Pins and needle sensations in my hands and feet, and shaking.
I told myself I had just gone through an incredibly large ordeal, and while things may be different, I’m healthier because of it. At some point, probably a few months after my surgery, I started to realize the larger benefits of my transplant. I was no longer as fatigued all the time. I had energy and the drive to do and become more. I felt as though during the surgery they must have taken out the old 4-cylinders and replaced it with a V8 Hemi.
Roughly 6 months after my transplant, the world began to recognize the seriousness of COVID-19. The U.S. shut down, and suddenly a new challenge was presented in front of me. For this challenge, however, I saw myself as being uniquely prepared to endure it. I was already accustomed to wearing masks everywhere. I was already hyper-vigilant to any chance of getting sick, and in the months I was furloughed without work, I was able to find ways to spend my time so I could feel accomplishment, even if it wasn’t at my job.
Throughout the entire process surrounding my liver transplant, I probably visited the hospital over 40 times. I have met hundreds of nurses and many doctors as well. I have undergone more procedures than I care to think about, and I feel I must admit an earlier falsehood. Hospitals aren’t just places where bad things occur. Hospitals are establishments meant to help people when bad things do occur. They don’t always succeed, but sometimes they do. I feel like my story is a testament to this.
I have made a habit of seeking out the purpose of things. If I can’t find one, I make one. Losing my mother, being diagnosed, and receiving a transplant, it has to be for something. I decided to make my transplant mark the start of something. After all, this was a second chance at life, and I needed to act as such.
My job for the past several years as a character performer has been to act out the stories of beloved Disney characters. In my personal life, I get to live out my own story. I have chosen to see the loss of my mother, receiving my liver transplant, and even the pandemic as major turning points in my own story. Living and acting in such a way as to make my story as interesting, fun, and successful as possible. When a challenge occurs, I decide how it must fit into my story and what effects it will have on me. Will it trip me up, or will it make me stronger? I have found, most often, it is a mix of both.”
Read more stories from chronic illness warriors:
‘After a yoga session, my spine slipped forward. I couldn’t move. I couldn’t roll over. I was a vegetable.’: Woman with Spondylolisthesis, chronic illness claims ‘pain is inevitable,’ but ‘suffering is optional’
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