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Articles and Updates from Phoenix Children's

August 10, 2021
My Liver Transplant – Adam’s Story
My Liver Transplant – Adam’s Story

Meet Adam, an amazing teenager who recently endured some very serious health issues. However, his experience was a life lesson in disguise and Adam learned a lot about himself in the process.

My health situation has made me grow up faster than I could have ever imagined. In fact, the past two years of high school were a rollercoaster ride, filled with more hospital visits than school. Even so, my persistent drive to learn has never stopped. My challenges have helped to develop true happiness and a purpose.

My high school experience was quite rocky. In the summer of 2018, during a summer vacation in Idaho, I experienced an itching sensation all over my body continuously for around three nights. This was alarming, since I didn’t know the cause. When I returned home, I immediately consulted an urgent care doctor. My itching kept returning, so I made the rounds to multiple doctors. Ultimately, I found myself at Phoenix Children’s Hospital. I was hospitalized in October for a week. After some testing, I was told by the Phoenix Children’s Hepatology Program that my liver had been injured but that it would recover.

A few months later, at the age of 17, I had turned jaundice-yellow, causing people to give me weird looks wherever I went. I didn’t realize it then, but I was very sick. My restaurant manager at Pita Jungle was concerned and suggested I go home during a shift. I explained to everyone who showed concern that the medication I was taking to stop the itching was causing the yellow color, or so I thought. In truth, I had absolutely no idea what was happening, let alone that I had an organ problem.

After three, one-week hospital stays, I was diagnosed, in December, with an autoimmune disease called primary sclerosing cholangitis (PSC). The disease, which wasn’t detectable in October, had advanced significantly. PSC is an autoimmune disease that causes the bile ducts to stricture so the bile seeps into my bloodstream. It causes scarring and chlorosis of the liver. My Phoenix Children’s hepatologist said when PSC is this aggressive, the only cure would be a liver transplant. When this news hit us, my mother immediately started to cry. I handled the news in a stoic fashion, staying as calm as I could. Little did I know then that this was going to be the hardest thing I could imagine.

Staying calm

Late one night during the same hospital stay, I blacked out and hit my head while standing in the restroom. I was not in control of my body for about 10 minutes. I thought I was dying. After coming to in the dark, I considered my mortality and what had just happened. I kept this experience to myself. It prompted me to look intensely into philosophies such as Buddhism and stoicism to cope with my health problems. My mortality preoccupied my mind over the course of several months while going through rigorous tests and scans at both Mayo Clinic and Phoenix Children’s to be listed for transplant. Nobody at school, nobody at home, nobody I had ever known, could relate with what I was going through. I was able to keep calm and collected through this stressful, maturing year. I thought about this every single day. By Christmas time, I was home and in need of a new liver.

My junior year in high school came and went. The winter of 2019, I received my first call from the Phoenix Children’s Liver Transplant Program. I was first in line for a liver that had become available. It was the right size for me. Petrified, I packed everything for another long visit to the hospital. Since this was before COVID-19, my entire family came with me. After seeing the liver up close, however, my surgeon did not think the liver was suitable (since I was young, a new liver would need to last a long time!).

This would happen two more times, before I’d finally receive the liver I have today.

Unfortunately, before transplant, my health would get much worse. I was hospitalized for a week each month in January, February and March. On April 3, two weeks after the country had shut down during the initial COVID-19 outbreak, I received a lifesaving phone call. Thanks to a generous family who had a lost loved one, a perfect liver was available.

I underwent transplant surgery at Phoenix Children’s Hospital just after midnight. Upon removal of my original liver, however, the surgeon saw it was half cancerous!

The doctors wondered how my liver was even working. My liver and a couple nearby lymph nodes were sent to pathology for analysis. After about a week in the ICU, the second wave of bad news hit me. As soon as I had recovered from surgery, I would start four rounds of chemotherapy at the hospital’s cancer clinic.

It’s important to note that this cancer did not show on scans. I had just undergone many, many tests. While they suspected cancer, it could never be confirmed. They certainly were not looking for large B-cell lymphoma, since the two conditions (PSC and this type of lymphoma) had only been documented as co-occurring in five patients. However, the timing of my transplant and discovery of the lymphoma was an absolute blessing in disguise. As of now, I am doing very well, exceeding the expectations of my doctors.

During treatment and recovery, I finished the school year, but I went even further than that. In fact, learning became a passion that would drive me through a challenging spring and summer. Simple curiosity picked up my spirits when I was at absolute rock-bottom. This passion now makes me pick up calculus and physics textbooks for fun.

I will never stop learning. I am interested in a career in statistics and advanced mathematics, especially one applied toward mechanical engineering. My curiosity is stimulated by the complexity of the applied sciences. I have an interest in automotive design and hope to one day solve engineering puzzles.

My Liver Transplant – Adam’s Story

My ideal future consists of good health for me, my friends and family. No matter what happens, I plan to strive to be as happy as I can. I was shown, firsthand, how fast health and happiness can be taken away. I try to make the best of bad situations and smile at the good ones.

Today, I celebrate the little things, like a nice cup of coffee, a deep conversation, a complicated problem to solve, a relaxing drive, exhilarating music and a thoughtful walk. My health situation has taught me all I need to know about how to cope with what comes. I cannot imagine a life different than the one I now have.

My extreme gratitude extends to the donor and his family, my own friends and family and my Phoenix Children’s doctors whom I now consider family as well.

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