Kidney failure brings extra complications for people living with disabilities.
Fiona McDonald’s 21st birthday should have been a celebratory milestone, but it turned out to be the day she was diagnosed with kidney failure.
“It was the beginning of the hardest chapter in our family’s life,” says her only sibling, Emma. The next nine years that Fiona had to spend on dialysis were particularly complex, because she has a rare chromosomal disorder that has affected her physical and intellectual development.
“Watching someone you love suffering, especially when they can’t fully understand why, is a kind of heartbreak I can’t quite describe,” says Emma.
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She and her parents, Michael and Pauline, took turns to be at Fiona’s side throughout, not only during dialysis, but also as she struggled with being too unwell to attend her day service centre.
Fiona is one of more than 5,400 people living in the State who have been diagnosed with end-stage kidney disease (ESKD) and are being treated with dialysis or through the transplant of a donor kidney, according to 2024 figures from the HSE National Renal Office. A successful transplant frees the recipient from the very demanding routine of dialysis, and greatly improves both their health and life expectancy. Just over half of those living with ESKD have had a transplant, while 2,581 are undergoing dialysis.
This is Organ Donor Awareness Week, which is organised by the Irish Kidney Association (ika.ie). Of the 263 organ transplants that took place in Ireland last year, 175 were of kidneys, including 30 from living donors.
“Don’t Leave Your Loved Ones in Doubt, Share Your Wishes about Organ Donation” is the theme this year of Organ Donor Awareness Week, run in conjunction with the HSE‘s Organ Donation Transplant Ireland service, until May 17th.
Within months of her diagnosis, Fiona had to start nightly peritoneal dialysis at home in Ballinakill, Co Laois. But she often pulled out the tubing, not understanding what it was for. “This led to repeated infections, hospital stays, and setbacks that drained all of us emotionally and physically,” says Emma.
After peritoneal dialysis failed, Fiona was switched to haemodialysis in Waterford hospital three times weekly, four hours at a time. She and a family member also had to cope with an hour’s journey each way to get this done until, a few years on, her treatment could be done in Kilkenny, cutting the travel time in half.
“We took it in turns to sit with her, amusing her with books, pictures and videos to avoid her pulling out the tubing. The years crawled by.” They lost hope of Fiona ever getting a kidney transplant. “There were times we felt invisible in the system.”
At the end of 2024, there were 559 people on the kidney transplant waiting list, up 4.5 per cent from the previous year. Recipients of kidneys from deceased donors are selected from the shortlist compiled by the National Histocompatibility and Immunogenetics Service for Solid Organ Transplantation (NHISSOT), based in Dublin’s Beaumont Hospital.
The National Renal Transplant Programme outlines the “decision tree” for selection of recipients: “Paediatric patients, ABO patients [ie those with one of the four main blood groups, A, B, O and AB], acceptable mismatched patients, significantly sensitised patients, full house matched patients, longest waiting.
“The strict order of decision-making may have to change due to factors such as a recipient has had one or more previous transplants; age, body weight and condition of the donor organs; the age, anatomy of the potential recipient; co-morbidities present in the potential recipient, etc.”
The final decision on accepting a particular kidney from a deceased donor rests with the transplant surgeon, following consultation with the nephrologist responsible for the care of the recipient.
When the call came from Beaumont Hospital one night in September 2022 telling the McDonald family that there was a donor kidney for Fiona, they were overwhelmed. After nine years, “we had forgotten what hope really felt like”. Once Fiona got her transplant, all of their lives were hugely improved, as normality could resume after almost a decade of dialysis, and she is back in day services full-time.
“Fiona’s amazing; always smiling and always in good form,” says Emma, who now has a one-year-old daughter, Katie. The McDonalds will be forever grateful to the family of the donor who gave Fiona the chance to live her life again and enabled them to see her become the brightest, healthiest, happiest version of herself.
“Stories like hers matter,” adds Emma. “Organ donation saves lives, even when the situation is complicated. Especially then.”
‘We have to have a “think outside the box” mindset’
Mother of three Louise Milicevic (nee O’Grady) was happily getting on with life despite the challenges of having cerebral palsy when she was told two years ago she also had hereditary polycystic kidney disease (PKD). She had understood that tests she underwent as a teenager, after her mother died of the disease at the age of 58, meant she would herself be free of it.
The diagnosis was itself shock enough, before being told she was in the fourth of five stages of kidney failure. Her condition only came to light because her youngest daughter had been found to have PKD at age six in 2022 after becoming ill; it later became apparent she must have inherited it from Louise.
“I kept thinking that they were going to tell me that they got it wrong because I didn’t have any major symptoms. I was feeling a little bit sluggish, a little bit tired in the morning, but I was putting that down to being a full-time working mum with a disability.”
My parents were remarkably resilient people, and when you are raised in that environment, it is instilled in you
— Louise Milicevic
Despite her dismay, Louise, who has just turned 50, knew she had to get on with her life. She and her South African-born husband Stefan, who also has cerebral palsy, are well practised at that. They both have just the use of one arm each, and there were “a lot of raised eyebrows” when they had the first of their three daughters, and came under huge pressure to prove themselves as capable parents.
“We have to have a ‘think outside the box’ mindset,” she says. “My parents were remarkably resilient people, and when you are raised in that environment, it is instilled in you.” She was only 15 when her mother died, but had watched her deal with her illness “with tremendous grace and dignity”.
Last August, Louise stepped back from work with the Rehab Group, choosing to devote her diminished energy levels to her family at home in Newbridge, Co Kildare. She started twice weekly dialysis, for three hours each time, in Tallaght University Hospital, Dublin, at the end of last year. To facilitate this, an AV fistula, which is a surgical connection between an artery and a vein, had to be made in her functioning right arm 12 weeks previously. That limb is her lifeline.
“I do everything with that arm. If I lost function, I wouldn’t have any level of independence.” When on the dialysis machine, she can do nothing for herself, such as lift a glass of water or read a book, and any infection in the arm would have a huge impact on her life.
Louise is not yet on the transplant list as she first has to have one of her kidneys, which has become very enlarged with cysts, removed. She is waiting for a timeline for that.
It is only after she goes on both the deceased donor and living donor lists that one family member’s potential as a suitable match will be investigated.
The fifth of eight siblings to be diagnosed with PKD, Louise sees light at the end of the tunnel through two brothers who have had transplants – “and they’re doing tremendously well”.
“I always will have end-stage kidney disease,” she adds, “but once you have the transplant, your quality of life is so vastly improved, and you can go back to doing pretty much everything you did before.
In the meantime, dialysis keeps us well and healthy and here, which is the most important thing.”
‘It was the last thing we could do for our daughter’
On the afternoon when Emma Harte had an asthma attack out of the blue that triggered a cardiac arrest, she was baking at home in Co Wicklow with her daughter Skye, who was about to turn three.
When Emma’s mother Rose rushed in, having been called home from just down the road by her husband, she saw green-coloured icing on the buns in the kitchen and her first thought was that this had caused an allergic reaction. Emma, who was 31 and engaged to be married, usually steered clear of foods and ingredients containing E numbers. She had been diagnosed with asthma as a child, but the condition had never caused her major problems and she had never been hospitalised with it.
It’s such a shame that so many people die and are buried [without giving organs] – and so many people can live because of them
— Rose, mother of late donor Emma
However, that afternoon, Rose found her eldest daughter in the bathroom, unable to speak, and she collapsed a moment later. Both Rose and one of Emma’s two sisters did CPR and got her pulse back before the first responders arrived at their house in Greystones.
Emma was put on life support in St Vincent’s Hospital, and initially her family were told “to ease the lungs”, says Rose. But it was to transpire that oxygen deprivation had caused brain death, so there was no longer any hope of recovery.
As the family kept vigil at the hospital, it was late in the evening when a woman introduced herself as an organ donor co-ordinator and raised the possibility of Emma’s organs being made available for transplant. While the thought was not in her parents’ minds at that distressing moment, “we were very acquainted with Emma’s wishes”, Rose tells The Irish Times more than six years later, so the suggestion “didn’t feel alien to us”.
Emma had been just 12 years of age when one day she produced an organ donation card for her mother to sign, as she was still a minor. There were boxes for different organs to be ticked, but Rose recalls putting a cross against “corneas” and telling her daughter, “they’re not getting your eyes”.
That card, from 1999, was carried everywhere by Emma, who was always very matter-of-fact about organ donation, and convinced it was the right thing to do. Just three weeks before she died she had been sent to the Royal Victoria Eye and Ear Hospital for an eye infection that was not clearing up and, poignantly, Rose remembers joking with Emma that her eyes would be no use to anybody now anyway.
Knowing exactly what their daughter wanted, her grieving parents immediately gave the go-ahead for organ donation that October night in St Vincent’s in 2018. “We didn’t even have to think about it, because it wasn’t our decision,” says Rose. “Even though I didn’t want her touched or cut, it was the last thing we could do for her on behalf of her.”
She imagines how difficult it must be for any distraught family going through something similar who don’t know a loved one’s wishes and may be conflicted about what to do. That is why she would encourage everybody to talk about organ donation within families, to make their choice clear and to carry a card, or opt in on the driver’s licence.
[ Donation of son’s organs ‘has gifted his family hope’, mother saysOpens in new window ]
Sudden death happens every day of the week, Rose points out, “but you just don’t think it’s going to come into your house. It’s such a shame that so many people die and are buried [without giving organs] – and so many people can live because of them.”
She has been told four females benefited from the transplanting of Emma’s organs, including a young girl who got her heart. The recipients have sent some “beautiful letters”, which are facilitated anonymously through the donor co-ordinator.
While Rose intends to write back some day, she has not been able to face it yet. She thinks other grieving parents might take some comfort from their deceased child’s organs helping others, but that is not the case for her.
“The fact that there are humans out there trying to live their best lives because of her is an amazing thing. But it doesn’t make me feel any better,” she adds candidly. The pain of Emma’s loss is too great. “You can’t be healed, you carry it – but it’s so bleeding hard.”
Meanwhile, they talk about her all the time “as if she’s here” with Skye, who is now aged nine, living with her father and doing well.
