'I was so sick when my son was born they prepared a bed for me in the labour ward' - Dad-of-three on battle with cancerBrian Dillon's first liver transplant didn't endure, and he needed a second one. He is now on a mission to encourage everyone to become an organ donor, so, if tragedy does strike, lives can still be saved
On August 2013, the Dillon family had a barbecue in the garden of their home, in Clarehall, north Dublin, to celebrate mum Celine's birthday. It was a joyous affair. Fortunately, Brian and Celine had no inkling that they would experience unbelievable trauma in the 12 months leading up to her next birthday barbecue.
Brian Dillon (35) grew up in Tallaght. He then spent five years studying electronic engineering. This led to a fulfilling job with Eircom. In 2007, Brian went to Kilkenny for a stag party, and that's where he met Dubliner Celine, a bank official. They were instantly attracted to each other. The following year, he and Celine moved in together.
Over the next couple of years, their daughter Isobel was born, and they married. Their son Ryan arived on St Patrick's Day in 2012. "We had to stop ourselves calling him the obvious," chuckles Brian. So things were going well, but soon after, all that changed.
In college, Brian had been diagnosed with a liver condition called primary sclerosing cholangitis (PSC). This is a chronic disease, which affects the bile ducts in the liver. Healthy ducts deliver bile, which helps in the digestion of fats and the absorption of fat-soluble vitamins, and is critical for the elimination of certain waste products, including bilirubin. "My only obvious symptom back then was fatigue," says Brian. "And once I was given medication, I didn't worry about it, apart from an annual visit to St Vincent's [University Hospital]."
But when he went for his check-up in 2013, blood tests suggested his condition had deteriorated. Brian says the consultant hepatologist advised him to have a biopsy. When both the first and the second biopsy proved inconclusive, he strongly advised Brian to have a third one. "We need to get to the bottom of this," he urged his patient.
Then one Friday, not long after, while working in his garden - something Brian loves to do - he got a voicemail that brought his world tumbling down around his muddy boots. He was asked to attend the liver transplant unit at St Vincent's the following Monday. "I knew this was really serious," he says, "so I called Celine and she came home. I was in meltdown; after all, we had two small children, and she was pregnant with our third." Just three weeks after her birthday barbecue, Celine accompanied Brian and his parents, Liz and David, to a meeting with the consultant at St Vincent's.
"He told me I had cholangiocarcinoma [bile duct cancer] and that I would need a transplant," Brian explains. "Then a transplant coordinator joined us, and told us what to expect. She and the doctor were very reassuring." Since no one could tell when a donor liver might become available, the priority was to make sure that the cancer didn't spread in the interim.
A treatment plan was put in place, which involved chemotherapy, radiotherapy and brachytherapy (radiation), to tackle the tumour. In November, Brian spent his 32nd birthday having chemotherapy at St Vincent's. All that week, he had it 18 hours a day, coupled with radiotherapy. While the radiotherapy continued for another five weeks, the chemotherapy was halted, and then resumed, five weeks later, for another week. "It was just gruelling," he says.
On New Year's Day 2014, Brian was admitted to hospital needing urgent blood transfusions. By then, he was extremely ill. "When your liver stops working, your whole system becomes poisoned," he explains. "Mentally and physically, I was broken, and my skin was yellow."
In January, their son Josh was born at Holles Street. "They prepared a bed for me and called me in when the baby was on the way," he says, while adding that the infant's arrival really lifted their sprits. But their joy was short-lived. In March, Brian began to experience such bad headaches, they feared the cancer had spread, but a scan proved otherwise. Nonetheless, it was now obvious that he urgently needed a new liver.
Then one midnight in April, he finally got "the call" and was already at St Vincent's by 1am. "At one point, both Celine and I had packed bags waiting by the front door," Brian recalls, referring to his wife's preparations for the baby. The transplant took about 10 hours and was followed by two days in intensive care.Brian says he felt "terrible" when he woke, and continued to feel awful. In a short space of time, he lost 32kg (about five stone). "They discovered I had a thrombosis of the liver. They even tried putting in a stent, but that didn't work," says Brian. Nonetheless, he was "absolutely devastated" when he was told he'd have to go through the whole procedure again. "I was put on an urgent liver-transplant waiting list, and two days later an organ became available," he says. "When I headed off to theatre, I still had a gaping hole in my chest and anther one in my stomach, from the first operation. I was so frightened, I had tears streaming down my face."
But following that surgery, Brian felt better straight away. "I never think of that first transplant as a failure," he says. "After all, it got rid of the cancer." Following some early setbacks, Brian was finally on the road to recovery. Once he got home, he continued to do extremely well, and these days, he only has check-ups once every six months. In time, Brian returned to work. Eventually he moved to the Dublin Airport Authority (DAA) and is happily ensconced there. He is immensely thankful for all the support he got from their two extended families, and from friends and colleagues. But he is most grateful to Celine. "She spent her maternity leave caring for three small kids and for me, when I was so desperately ill," he says, with deep love in his eyes. "She was crying when she left the hospital most nights, but I didn't know that until recently."
His thanks also goes to his primary consultant at St Vincent's, who was not prepared to leave anything to chance, and to the donors of both livers. "I think about them and their wonderfully generous families every single day of my life," says Brian. "Without them, Celine wouldn't have a husband, and my children wouldn't have a dad."
Organ Donor Awareness Week, which began yesterday, April 1, and is organised by the Irish Kidney Association (IKA), encourages families to discuss their wishes concerning deceased organ donation. You can support the IKA by buying 'forget-me-not' flowers and other merchandise from volunteers who will be distributing organ donor cards.
For more information, see ika.ie or freetext DONOR to 50050
Sunday Indo Life Magazine