The importance of organ donation for one Donegal family

'It's not until you're in the situation that you see the importance of organ donation.' - Fiona Black

By Carolyn Farrar

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By Carolyn Farrar

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editorial@donegaldemocrat.com

The importance of organ donation for one Donegal family

Allistair and Fiona Black

Six members of a Letterkenny family of 18 siblings have undergone kidney transplants, two of them within weeks of each other in recent months.

At least three more of their siblings expect to be on dialysis in the future, and will likely need transplants as well. Only recently it was identified that a number of the siblings carry a rare gene for a highly unusual form of kidney disease that is still being researched.

“It’s not until you’re in the situation that you see the importance of organ donation,” Fiona Black (nee Kelly) said. “With our family, we’re dependent on a lot of people. We’re dependent on donor cards because there are a lot of us affected.”

Fiona and one of her brothers, John, told their stories at the start of Organ Donor Awareness Week, which runs from April 1st to 8th.

“I don’t think I could express in words the difference it makes,” John said.

Earlier this year, Fiona, mother of four children, received a kidney from her husband, Allistair. John received a kidney in December from a donor who was deceased, after being on dialysis for five and a half years.

Their mother, Bridget, “Bridie” Kelly, had also received a kidney transplant. Bridie passed away in 1997, 17 years after her transplant surgery.

“She always looked after the kidney,” Fiona recalled. “She used to travel to Dublin for dialysis three times a week.”

The family has a particular appreciation for people who carry donor cards. Their sister Angela, who lives in the States, also received a kidney from a living donor. But the rest of the family received their kidneys from donors who had passed away.

“That’s five families that have helped my family,” Fiona said.

“It’s not just one life they save,” she said of donors. With kidney donation alone - not to mention the donation of other organs or tissue - one deceased donor donates two kidneys.

“That’s two lives that have been improved and changed for the rest of their days,” Fiona said.

Fiona’s story

The family history meant that the siblings have long been tested for kidney disease. The illness has developed in family members as they reached their late 30s or older, and Fiona had been tested for more than 12 years before she had to go on dialysis last September.

For Fiona, that meant home dialysis, eight hours a night as she slept. The first night she was on dialysis at home, Allistair was in Dublin, about to undergo tests the next morning at Beaumont Hospital to judge his suitability as a donor.

Fiona had suggested that Allistair might want to hold on to his kidneys in case one of their children needed one down the road, but doctors told them that if that were to happen in future they would be seeking a donor closer to the child’s age. Allistair had no hesitation in putting himself forward as a donor for his wife.

If Allistair had not been found to be a suitable donor, Fiona would have been on dialysis until a donor could be found. Some of her other siblings had been on dialysis for a year or more.

“It was only through donors that they had any life afterwards,” Fiona said.

When it came time for surgery in February, the couple left for Dublin on a Monday and returned the following Tuesday. Their children Óran, 18 and Kelly, 17, accompanied them to Dublin, and Cara, 9, and Gavin, 8, stayed with an aunt.

Seeing Fiona on dialysis had been particularly hard on their two youngest, Fiona and Allistair said. “They were aware of how serious it was,” Allistair said.

Now, 13 weeks after their surgeries, Fiona and Allistair look and feel great.

“Everything’s been plain sailing since the kidney was popped in,” Fiona said. Allistair was back at work this week.

They say they have seen the difference in their children, too. The two youngest were glad to see the dialysis machine leaving the house, Fiona said.

“Cara and Gavin are back to themselves again,” she said.

Allistair said anyone considering donation is not doing it for the recipient alone. “You’re doing it for their families as well,” he said.

John’s story

John Kelly received his transplant surgery around the Christmas period after being on dialysis for five and a half years.

“I was told your life will go on hold until you get a transplant and I thought, no, that’s rubbish,” he said. “But no, it actually does totally go on hold.”

John said, “If you had rang me a week before Christmas I couldn’t have spoken to you; I wouldn’t have been able.” He wouldn’t have had the strength, he said.

This past year he spent largely about the house because of his illness. That has all changed since the surgery.

“I’m back to normal now, full of life again,” he said. He said he was out of bed the day after the surgery and in great form a few weeks after.

John had been on a gruelling dialysis regimen - three times a week for four hours at a time - for all those years because 11 potential donors identified earlier were found not to be a tissue match.

Finally, at 1.15am one morning, he got the call while at home with his partner, Ann.

“The woman said, ‘Is this John Kelly?’ and I said yes, and she said, ‘This is the coordinator for Beamont Hospital.’ And that was it.

“The body started shaking,” John said, recalling his excitement. “I was out the door in 25 minutes and was up in Dublin in two and a half hours.” His brother Danny drove him.

“You have 30 minutes from getting the call to leave the house as fast as you can,” he said.

John was six days in hospital before returning home.

“It’s just a whole new lease of life,” he said. “I had actually forgotten what normal life should feel like after all those years of dialysis - to wake up in the morning and not feel nauseous and not get sick before breakfast and not get sick after breakfast.”

He was not encouraged to ask for information about his donor, and he has not. But he is very grateful.

“Someone made that decision to carry the card,” he said. “Someone made a seriously generous gift on their death, a whole new life after their death for me and for another person as well and God knows how many.

“It’s a great end of life gift for somebody, and a start of life gift for someone else,” John said.

How to get a donor card

The key focus of The Irish Kidney Association’s Organ Donor Awareness Week is to remind the public to have the important family discussion about their wishes concerning deceased organ donation and to support the Irish Kidney Association, while its volunteers distribute the organ donor cards.

The annual life-saving campaign aims to highlight the ever-increasing demand for organ transplantation, which relies on the public for organ donation.

Its key message is that families need to discuss organ donation and keep the reminders of their willingness to donate visible by carrying the organ donor card, downloading the Smartphone App and permitting Code 115 to be included on their driver’s license.

The Irish Kidney Association is the national organisation charged with the promotion and distribution of the organ donor card in Ireland, on behalf of Organ Donation Transplant Ireland.

Free information fact files are available from the Irish Kidney Association and from pharmacies, GP surgeries and Citizen Information Offices.

Organ Donor Cards can also be obtained by phoning the Irish Kidney Association, LoCall 1890 543639, Freetext the word DONOR to 50050, or visit website www.ika.ie.

It is possible to store an organ donor card, the ‘ecard’ on smartphones.

Simply search for ‘Donor ECard’ at the iPhone store or Android market.