Renal failure leads to extra complications in people with disabilities.
Fiona MacDonald's 21st birthday should have been a celebration milestone, but it turns out to be the day she was diagnosed with kidney failure.
“It was the beginning of the most difficult chapter in our family's life,” says her only brother, Emma. The next nine years Fiona had to spend on dialysis were particularly complicated as she had a rare chromosomal disorder that affected her physical and intellectual development.
“When I see people who love you suffer, it's kind of heartbreak I can't fully explain, especially when they don't fully understand why,” says Emma.
She and her parents, Michael and Pauline, suffered from being too sick to attend her day service center, not only during dialysis, but also to be on Fiona's side.
Fiona is one of more than 5,400 people living in the state diagnosed with end-stage renal disease (ESKD) and being treated with dialysis or donor kidney transplants, according to figures of 2024 by the HSE National Renal Office. A successful transplant will free the recipient from a very strict dialysis routine, significantly improving both health and life expectancy. More than half of those living with ESKD have undergone transplants, while 2,581 have undergone dialysis.
This is Organ Donor Awareness Week, sponsored by the Irish Kidney Association (Ika.ie). Of the 263 organ transplants that occurred in Ireland last year, 175 were kidneys, and 30 were from live donors.
“Don't leave your loved one in doubt, share your wishes about organ donation.” This year's theme Organ Donor Awareness Week will be running until May 17th, in conjunction with HSE's Organ Donation Transplantation Ireland Service.
Within months of her diagnosis, Fiona had to start peritoneal dialysis at home at Ballinakil, Raowa. However, she often didn't understand what it was for, so she pulled out the tube. “This led to repeated infections, hospital stays and set-ups that have emotionally and physically drained us all,” Emma says.
After a failed peritoneal dialysis, Fiona was switched to Waterford Hospital hemodialysis three times a week, four hours at a time. She and her family also had to deal with each one-way, one-way, hour-long journey to accomplish this until they were able to undergo treatment at Kilkenny in a few years, cutting their travel time in half.
“We took turns sitting with her and entertained her with books, photos and videos to avoid her pulling out the tube. They lost hope that Fiona would have had a kidney transplant. “We've felt that we couldn't see in the system.”
At the end of 2024, there were 559 people on the waiting list for kidney transplants, an increase of 4.5% from the previous year. Kidney recipients from deceased donors are selected from finalists compiled by the National Histocompatibility and Immunogenesis Services for Solid Organ Transplants (NHISSOT), based at Beaumont Hospital, Dublin.
The National Kidney Transplant Program outlines a “decision tree” for recipient selection. “pediatric patients, ABO patients” [ie those with one of the four main blood groups, A, B, O and AB]patients with acceptable incongruence, patients with significantly sensitized, patients with full house matching, patients with longest waiting.
“The strict order of decisions may have to change due to factors such as one or more previous transplants of recipients: age, weight, donor organ status, age, the anatomy of the potential recipient, comorbidities present in the potential recipient, etc.”
The final decision to accept a specific kidney from a deceased donor follows consultations with the nephrologist responsible for the care of the recipient, followed by a transplant surgeon.
One night in September 2022, when they received a call from Beaumont Hospital, they were overwhelmed when they told the McDonalds that Fiona had a donor kidney. Nine years later, “I forgot what hope really felt.” When Fiona receives her transplant, their lives all improve significantly as normality could resume after almost a decade of dialysis, and she is back to daytime service full time.
“Fiona is amazing. Always smiling, always in good shape,” says Emma, who now has a one-year-old daughter, Katie. McDonald is forever grateful to the donor's family who gave Fiona the opportunity to live her life again and see her become the brightest, healthiest, happiest version.
“Stories like her,” Emma adds. “An organ donation saves lives, especially at the time, even when the situation is complicated.”
“We need to have a 'thinking outside the box' mindset.”
The mother of three Louise Milisevik (formerly Oogradia) was happy to continue her life despite her cerebral palsy challenges when she was told she also had her own inherited polycystic kidney disease (PKD). She understood that after her mother died of illness at the age of 58, the test she took as a teenager would allow her to be free from it.
The diagnosis was a shock in itself and she was said to be the fourth of five stages of renal failure. Her condition became clear after she was found to have PKD at the age of six in 2022 after getting sick in 2022. It was later revealed that she must have inherited it from Louise.
“I kept thinking they were telling me they were wrong because they didn't have any major symptoms. I felt a little slow, I was a little tired in the morning, but I ended up making it a full-time working mother with a disability.”
My parents were very resilient and when you grew up in that environment it will permeate you
– Louise Milisevic
Despite her disappointment, Louise, just 50, knew she had to continue her life. She and her South African-born husband, Stephen, also suffer from cerebral palsy, which is often practiced. Both of them each used one arm, and when the first of their three daughters was there, they had “false eyebrows” and were under great pressure to prove themselves as capable parents.
“We need to have a 'think about the outside of the box',” she says. “My parents are extremely resilient people, and when you grow up in that environment, it permeates you.” She was 15 when her mother passed away, but she was watching her deal with illness “with incredible grace and dignity.”
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Last August, Louise quit her job with a rehabilitation group and chose to dedicate her family a reduced energy level to her family at her home in Newbridge, Colorado. She began dialysis twice a week for three hours each time at Taragut University Hospital in Dublin at the end of last year. To facilitate this, the AV f, the surgical connection between the artery and the vein, had to be made with the right arm, which functioned 12 weeks ago. Those limbs are her lifeline.
“I do everything with that arm. If I lose function, I don't have a level of independence.” On the dialysis machine, she can't do anything for herself, like lifting a glass of water or reading a book. An arm infection will have a major impact on her life.
Louise is not yet on the transplant list as she must first have one of her kidneys. She is waiting for a timeline for that.
Only after she lists that both the donor who died and the living donor are investigated as a proper match.
Louise, the fifth of eight siblings diagnosed with PKD, sees the light at the end of the tunnel through two siblings who have been transplanted. “And they're doing very well.”
“I've always had end-stage kidney disease,” she adds.
In the meantime, dialysis keeps us well and healthy and is the most important thing here. ”
“That was the last thing we could do for our daughter.”
In the afternoon, when Emma Hart was attacked by Blue, which caused cardiac arrest, she was baking at home in Cocowicklow with her daughter Sky.
When Emma's mother was running in and called out to the house by her husband, she saw green icing on the kitchen bread, but her first thought was that this caused an allergic reaction. Emma, who is engaged in getting married at the age of 31, usually avoids foods and ingredients that contain electronic numbers. She had been diagnosed with asthma as a child, but this condition never caused any major problems for her and she had never been hospitalized for it.
It's a shame that so many people are dead and buried [without giving organs] – And so many people can live for them
– Rose, mother of late donor Emma
However, that afternoon, Rose found her eldest daughter in the bathroom and was unable to speak, and after a while she collapsed. One of the two sisters, Rose and Emma, performed the CPR and regained her pulse before the first responder arrived at the Greystones house.
Emma was on life support at St. Vincent's Hospital, and initially her family was told to “relieve the lungs,” Rose says. However, oxygen deprivation caused brain death. So there was no more hope for recovery.
It was late in the evening when the family continued to stay up all night in the hospital, the woman introduced herself as the organ donor coordinator, increasing the likelihood that Emma's organs would be available for transplants. The idea was not in the minds of her parents in that tragic moment, but “we were very familiar with Emma's wishes,” says Rose, who told me more than six years later in Ireland, “we didn't feel the proposal was alien to us.”
Emma was only 12 years old one day when she created an organ donation card for her mother to sign, as she was still a minor. There was a box to check out the various organs, but Rose recalls putting a cross against the “cornea” and telling her daughter, “They don't get your eyes.”
Since 1999, the card has been carried everywhere by Emma, who has always been very factual about organ donation, and I am sure that's the right thing to do. Three weeks before her death, she was sent to Royal Victoria I & Ea Hospital, where she had not been cleaned up due to a gaze infection.
Knowing exactly what her daughter wanted, her grieving parents quickly gave organs for an organ donation in October night at St. Vincent in 2018. “We had to think about it. “Even if I didn't want her to touch or get cut, it was the last thing I could do for her on her behalf.”
She imagines how difficult it is to experience something similar, which may not know the wishes of her loved one and may be at odds about what to do. That's why she encourages everyone to talk about organ donation within the family, clarify their choices, carry their cards or choose a driver's license.
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Sudden deaths occur every day, Rose points out. [without giving organs] – And so many people can live for them. ”
She is said to be four women who have benefited from Emma's organ transplant, including a young girl who captured her heart. The recipient sent “beautiful characters” that were promoted anonymously through the donor coordinator.
Rose is planning to pay it back one day, but she still couldn't face it. She believes that other grieving parents may gain the comfort of helping others from the organs of their deceased child, but that's not the case for her.
“The fact that there are people out there who are trying to live the best life for her is amazing. But it doesn't make me feel good,” she adds frankly. Emma's loss is too much pain. “You can't be healed, you carry it – but it's bleeding so hard.”
Meanwhile, they always talk about her “as if she was here.”
