Aaron Smith, from Omagh, became the first adult in Northern Ireland to receive a living donor liver transplant after his cousin Robert Smith came to his rescue.
Aaron had to wait two and a half years for his organs to be donated, and he feared he would become one of the 20% of patients who die while still on the donor list.
His parents were ineligible to be living donors as they were over the age limit of 50, and his sister Alexandra was tested but had the wrong blood type.
But his cousin Robert, originally from Drumquin but now living in Bedfordshire, secretly took a compatibility test and came forward to make Aaron a life-changing offer.
Aaron is now recovering well and hopes to return to study mechanical engineering at Queen's University Belfast in September this year.
Aaron noticed the first signs of illness at age 14 when he was diagnosed with ulcerative colitis and treated with steroids, but blood tests revealed abnormalities in his liver function.
Then, at age 19, he developed his first liver infection and was diagnosed with primary sclerosing cholangitis (PSC), a rare and incurable disease that blocks the bile ducts.
“The disease blocks the bile ducts and causes infection. It scars the liver and reduces liver function. My liver function is down to 5 percent,” Aaron explained.
“But because the liver is managing so many things, there are a lot of side effects. Your body can't sleep because you don't have any stored energy. You're constantly itchy because your liver isn't purifying your blood. My body would turn yellow. The itching felt like I had chicken pox for three or four years straight.”
Aaron was put on the liver donor list in November 2015 but was warned there could be a long wait.
“They told me it would be two and a half years before I'd be on the waiting list, and I felt bad at that stage because it was still a long way off, so it was absolutely awful,” he said.
Aaron travelled to King's College Hospital in London to be briefed on what to expect after the surgery and to be prepared for the procedure at any time.
“I've heard that 20 percent of people on the list never get to transplant and end up dying,” he said.
“But when I was there they mentioned living organ donation, but we didn’t know it was a real thing.
“My mum and dad were automatically ruled out due to their advanced age and my sister was also tested but had the wrong blood type so I thought that was the end of it.
“But a few months later, Robert called me and said he’d heard about it from my family, had been tested and was a match.
“I was probably the last person to know that! He made a decision, discussed it with his family, and once he made his decision, he stuck to it. That was a really big gift.”
The transplant took place at King's College Hospital in October, and despite the 14-hour operation, Aaron was up and walking within a week.
“The liver returns to its normal size within about four weeks and is fully functional within six weeks,” he said.
“I never expected that and I can never repay Robert for that. It was just a huge gift and it really helped me a lot.”
“I was in a terrible state at the time, but this medicine saved me a lot of suffering and even saved my life.”
Robert said he only realised living donation was an option after hearing that Aaron's sister was being tested.
“When that happened, I realized I could be a potential donor,” he said.
“I've known him for a long time and he's been sick for the last 10 years, so I thought if there was anything I could do for him I'd be happy to do it.”
Robert suffered complications from nerve damage but is hopeful he will make a full recovery given time.
“It's going well. Aaron especially has a lot of energy. He goes for walks, he goes mountain climbing. He's enjoying life. That cheers me up because he missed out on the last five years.”
Aaron is trying to raise money for the three organisations that have supported him – organ donation awareness charity Live Life Give Life, the transplant team at King's College Hospital and the Royal Victoria Hospital Liver Support Group.
And he urges people to consider organ donation.
“One organ donor can change nine lives. For anyone who has lost a loved one, that's a huge gift,” he said.
For more information on the campaign, please visit Aaron's GoFundMe page at www.gofundme/aaron-smyth.
