By Amanda J. Setto, OD, of Los Angeles, California
While volunteering at UCLA, I never thought I would one day be a patient there. My plan was to become an optometrist. However, amidst the volunteering, school applications and interviewing, I began to experience random symptoms such as constant itching and abdominal distention. Of course, I started to worry. What could be causing this?
After spending hours browsing the web, I had come to the conclusion that I could have liver cirrhosis. At the time, I had also gotten my acceptance letter from Western University of Health Sciences College of Optometry. I was excited but worried about my health. Within days, jaundice kicked in and I was admitted quickly through the ER. Unfortunately, my suspicions had been correct. My liver was failing rapidly from a rare autoimmune disease called primary sclerosing cholangitis. This devastating disease occurs to five percent of patients with ulcerative colitis, a condition I’ve dealt with since the age of 9.
With a liver transplant as the only possible cure, I was placed on the waiting list at UCLA’s Ronald Reagan Medical Center. Paradoxically, the sicker a patient on the organ transplant list becomes, the quicker the patient moves to the top of the priority list. Somewhere along my increasing hepatic encephalopathy and kidney failure, I fell into a coma for two weeks. With just 24 hours left to live, I finally received a liver transplant on April 1, 2011. It was a miraculous yet tragic gift that I think of every day. I got a second chance, but another family had to deal with the grief of losing a loved one. I can never thank my organ donor in person, but I hope I can make her proud of the life she’s given me.
Even after transplant, I had a multitude of complications and surgeries (nine total) including a month-long fever and infection, pulmonary embolism, tracheostomy, kidney failure and total muscle loss. I had to relearn everything… how to breathe on my own without a ventilator, how to sit up, talk without a trach and walk on my own. It was like I had been reborn and everything was new to me.
My aunts, uncle, cousins, friends and even my new UCLA family of nurses, care providers and doctors gave me constant support. But what really got me through my total of nine months in the hospital was my mom. She stayed with me every single day and every night. She slept on chairs and makeshift beds just to be by my side. I don’t think I would be here without my mother’s calming voice, her soothing nature, her patience and her strong belief that I would conquer it all.
After the hospital stay, I spent one year at home recuperating. Luckily, Western deferred my acceptance and I was able to start school in 2012. Optometry school is a difficult academic endeavor, but it challenged me mentally, emotionally and physically. However I had come too far to simply give up. Whenever I doubted myself, I would always say, “I survived a liver transplant; I can survive this.” That motto got me through school and definitely gets me through difficult times.
Now, I work at a local community health center, Clinicas Del Camino Real, Inc., helping the underserved and economically disadvantaged. I’m also helping my mom through her battle with ocular melanoma; I discovered it in time, but it’s been a tough journey.
This year marks nine years since my transplant, and I am so thankful to be where I am today. I wouldn’t be a walking miracle if it wasn’t for my health care heroes, the unending support of my family and friends and, most importantly, my organ donor who gave me a second chance at life!
Follow Dr. Setto’s artistic eye-related page on Instagram @eyeaholic.
