My name is Chris and in November 2016 I received the liver transplant that would change my life in so many more ways that I could have imagined.
I was 16 when I was diagnosed with Primary Schlerosing Cholangitis (PSC) and Ulcerative Colitis (UC). The PSC affected my liver’s bile ducts, causing them to become scarred and narrowed, which results in blockages leading to infections and eventual liver failure. The UC is a form of inflammatory bowel disease often found tag teaming PSC and until my transplant was well managed.
Once the UC was under control, life went on as normal for quite a while. I finished school, went to university, took a break to travel, went back to university, and even managed to get full-time work in my area of study before things started to take a dive.
It was about 5 years after diagnosis that I started noticing the symptoms of the PSC. Itching hands and feet, chronic fatigue, weight loss, signs of jaundice. Over the next few years, these symptoms worsened, along with my routine test results. In the middle of 2015, around a month after starting in my new job, I was admitted to hospital after experiencing intense pain in the right side of my abdomen. I’d had similar pains in the past but never as prolonged or as painful, so by the afternoon I was waiting in my local emergency department to be looked at. After a few scans and blood tests I was given IV antibiotics and told I’d developed cholangitis (an infection within the bile ducts). After a couple of weeks, I was out and things started to return to normal. Throughout the next year things started to progress considerably faster and my specialist team decided it was time that I went on the transplant list.
Within a month or so of completing the tests needed to be placed on the list, I was admitted to hospital again, this time with a gallbladder packed full of gallstones. With my liver in the condition it was in, an operation to remove my gallbladder was not an option. Instead, a drain was inserted through my abdomen into my gallbladder to remove the pressure caused by continually backing up bile. This largely worked as a short-term solution and within a fortnight I was home again, but this time was different. I was exhausted ALL the time. I needed multiple sleeps through the day and struggled to sleep at night due to pain and itching. My skin and eyes became permanently yellow, to the point that people couldn’t help but comment every time they saw me. Three weeks after discharge I was back in hospital, the cholangitis had struck again.
After spending another 2 weeks in hospital I was prescribed cycling antibiotics and stronger, oxycodone based pain relief. On discharge, I was told there was not much else that could be done until a donor liver became available. If had the pain became too much, I was to return to ED so I could be monitored, but no one had any idea how long I’d be waiting. Only 4 days later, I received the call I knew was coming for over a decade, they’d found me a liver.