“I am very, very lucky – organ donation has given me my future back”
WHEN Mairead Kelly regained consciousness after her liver transplant, one of the first things she noticed was that the endless itching that had plagued her had stopped.
She was also struck by the realization that her marriage, which had been put on hold until an organ donor was found, could take place and her future had been returned to her.
The Cookstown woman, now 34, received her liver four years ago last week.
The anniversary coincided not only with Organ Donor Awareness Week, but also with the second reading of the Organ and Tissue Donation Bill in the Assembly.
If the legislation is passed, people will automatically become donors unless they specifically opt out, bringing Northern Ireland in line with the rest of the UK.
There are currently around 115 people here on the organ waiting list and each year around 10 to 15 people die while waiting for a transplant.
The figures also show that while 90 percent of people in Northern Ireland support organ donation, only half have signed the organ donor registry.
And because only one percent of people die in circumstances where donation is possible, every signature on the registry is vital.
All Mairead knows about her donor is that she was a 57-year-old woman.
“This lady and her family are my heroes,” she said. “I’m so grateful that they had this conversation and that she signed the organ donation register. Without it, I wouldn’t be here.”
Mairead’s liver problems began in her twenties when she was diagnosed with primary sclerosing cholangitis (PSC) and cirrhosis, caused by the ulcerative colitis she had suffered from since childhood and the medications she was taking for it.
“PSC causes the common bile duct to narrow and scarred and prevents bile from flowing into your liver, so the bile passes into your bloodstream instead,” she explains.
The result was an itch that she couldn’t find relief from and caused her to scratch so badly that she developed cuts that became infected.
She was also troubled by lack of sleep, lack of appetite, hair loss, and throbbing pains on the right side of her body.
However, Mairead’s initial reaction was to just keep going.
“At this point I was working at the Glenavon House Hotel in Cookstown and I loved it. I never stopped because I knew that if I did, I couldn’t do it again, ”she says.
“I had locks of hair that had fallen out and, as a young girl, it was very upsetting.
“It was all draining mentally and physically.”
However, things picked up in 2016 as her condition worsened, with Mairead telling her doctor at the Royal Victoria Hospital (RVH) that she was unsure how long she could cope.
Then in March she was asked to go to King’s College Hospital in London where she was assessed and was told she had reached the point where she needed a transplant.
“It was such a relief to know that there was light at the end of the tunnel,” she said.
Mairead and her boyfriend Damian got engaged soon after, but declined to set a wedding date due to the uncertainty surrounding an organ donor.
“We had been dating for about a year then and I said to Damian, ‘You can go now, I don’t blame you’ and he said, ‘Would you like to be good’. “
In August 2017, there was a bitter disappointment when Mairead visited King’s after being informed of a possible liver, only to learn, following tests, that the organ was not viable for a transplant. .
But a month later, the life-changing call arrived, with news that a possible match had been found.
“I was taken with mom in an air ambulance to King’s, I took the tests and at 11 in the morning they said I was going to the theater,” Mairead recalls.
“I was operated on for five and a half hours, at King’s for 10 days, then back to the Royal in Belfast and was so successful that they let me go home on the third day.”
Since then, Mairead says she has “never looked back” despite a rejection seven months ago that led to her being admitted to the RVH liver unit.
Although she received high doses of intravenous steroids for two weeks, the treatment did not work and Mairead was transferred to King’s for another 10 days of different drugs which luckily worked.
“Damian came to London with me and he was allowed to come and see me for an hour a day, which was very nice,” says Mairead.
“I also had mum and dad’s support from my home via a video call and I couldn’t have faced without seeing them.
“The doctor told me if the medicine didn’t work I would be there until I got a new liver.
“I don’t know the reason for the rejection. It’s just one of those things. Organ donation is amazing but your body will always try to fight this organ.
“I take pills every day but it’s a small price to pay to still be here.
“It wasn’t until the last two weeks that my blood levels came out of rejection properly.”
Mairead says she will be forever grateful for the support of her family, including mom and dad Siobhan and Tony McHugh, friends, the “fantastic” RVH liver support group and the team of doctors, nurses and doctors. transplant coordinators over the years.
She considers herself “very, very lucky”.
“When you go through something like this, you find out who’s there for you and who’s not,” she reflects.
“My family is everything to me. I’m happy with very little. I spend time with my mom and dad every day. My nieces and nephews, my grandmother, my husband, my family and friends – as long as I know they’re okay, I’m fine.
“Even when I was going through my rejection, the number of people who came to support me – light candles, say prayers, be in touch just to let you know they were thinking of you. People are so nice.”
Mairead says the RVH Liver Support Group, in particular, has been of tremendous help to her and her family.
It was founded in January 1998 by Kay Duffy of Moy in County Tyrone after her husband Frankie had a successful liver transplant in 1995.
Now a registered charity, it complements the support already provided by RVH staff, providing a listening ear and fundraising to help purchase hospital equipment and provide grants for people who need to travel outside of Northern Ireland for treatment.
Says Mairead: “I think everyone should be an organ donor and families should talk about their wishes. One person has the potential to save the lives of nine people.
“You could end so much pain and suffering for someone just by this selfless act.”
The organ donor registry can be found at organdonationni.info.