Brian Dil­lon’s first liver trans­plant didn’t en­dure, and he needed a sec­ond one. He tells Joy Or­pen he is now on a mis­sion to en­cour­age ev­ery­one to be­come an or­gan donor, so, if tragedy does strike, lives can still be saved

Sunday Independent (Ireland) - Life - - HEALTH CASE STUDY -

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 checkup 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

‘When I went to theatre, I had a hole in my chest. I was so fright­ened, I had tears streaming down my face’

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