‘I’ve got my life back thanks to my donor family’
Without a new kidney, Jonny Quigley faced an exhausting life built around dialysis
Jonny Quigley was one of 153 people who received a kidney transplant last year. Last March, he received a call at 2am from Beaumont hospital after five months on the waiting list, saying they had found a match for him.
The usual wait time for a kidney in Ireland is 3½ years, but his rare AB+ blood type and the fact that he had no antibodies in his blood meant that if a kidney that would match him became available, there were few other people on the list who it would be suitable for.
“I had a dialysis session that morning, and I thought it was a dream. I was with Clodagh, my wife, and I asked her to pinch me because I really thought I was dreaming. You live for this because you know it’s an opportunity to get some sort of life back,” says Quigley.
He found out he had polycystic kidneys when he was 29 after his sister had received the same diagnosis. It is a genetic condition that causes fluid-filled cysts to form on the kidneys, gradually decreasing kidney function. By the time Quigley was 42 in 2011, he had just over 15 per cent kidney function, he was suffering from gout, high blood pressure, constant nausea, a complete lack of energy and he was constantly cold.
His renal team put him through a series of strenuous tests over a three-month period before his final consultation to determine if he was suitable for transplant.
Having ticked all the boxes, the final test was a physical exam, where they discovered Quigley had such large kidneys that there would not be space to transplant a new kidney in beside his own, which is the usual procedure. He had to have a kidney removed before he was put on the waiting list.
“It was a massive kidney; it was 10kg . . . so I was pretty beaten up after that. I was out of work for eight weeks,” he says.
Before the kidney removal, he had to have an operation to create a fistula to allow for dialysis – the external removal of waste from his blood. Then he began attending Beacon Renal three days a week for six hours at a time to have dialysis.
‘Poisoned’“Dialysis just kept me alive . . . If you weren’t doing it, toxins would build up and your other organs would fail. You’d be poisoned,” he says. “I’d go in at 6.30am and leave about 12.30pm and go straight to work afterwards. I’d be exhausted.”
He works as the senior vice-president for business development for Northern Trust, and had already stopped the international travel involved in his job because of his condition.
After five months on dialysis, he received the transplant call. The kidney took immediately, and doctors were surprised at how quickly Quigley’s creatinine levels – a chemical waste product in the blood – returned to that of a normal man of his age, let alone someone a year after a kidney transplant.
Quigley has three young children, aged between seven and 12, and has recently returned from a skiing holiday with them and his wife, something that wasn’t imaginable before the transplant.
“I know the enormity of what my donor and their family did for me, without them I wouldn’t be here. I’d be finishing up on dialysis at this time, and that’s a tough life. You grind your way through; it’s an existence not a life . . . I’ve got so much energy now and it’s changed my outlook on life.
“Without me having my kidney, I wouldn’t be able to do what I’m doing now: getting back to my young family, giving them the life they deserve. I wouldn’t be able to work the way I’m working now. I’ve got my life back and without that donor family, I wouldn’t,” he says.
He wrote his donor’s family a letter expressing his gratitude and he hoped in writing the letter they would find comfort in knowing they had helped him.
Organ donation is something he believes all families should discuss openly. It’s not a morbid conversation but a pragmatic one, he says. “It’s obviously close to my heart, but all it needs to be is you saying, ‘god forbid if anything happens me, this is what I want’. It’s a much easier decision for a next of kin if they know the person’s decisions prior to any tragedy happening.”
This was certainly true for Una Smith, whose mother Kathleen suffered a fatal aneurysm in July 2011 at the age of 55.
Kathleen was painting her other daughter’s house and was about to start to paint an elderly woman’s house next door when she collapsed.
At Cavan General Hospital they identified an aneurysm and transferred her to Beaumont Hospital, but by the time she arrived, she had had another brain bleed and doctors declared her clinically dead.
Smith was 23 at the time, and had been carrying an organ donor card since she was 15. Kathleen had asked her about it previously, and said if anything were to happen to her, she would like to donate her organs because she felt there was no point being buried with organs that might be useful to someone else.
“It was funny how it came up; she was saying whatever they need they can have and whatever they don’t need, they can donate to science, which she thought was funny because she was a smoker and she thought her body was ruined,” says Smith.
Simple decisionA nurse at Beaumont took Smith and her siblings into another room and asked about organ donation and Smith repeated her mother’s wishes.
She has eight siblings, and rang those abroad to let them know, but says the decision about donating her mother’s organs was a simple one.
“We didn’t have to decide to turn off her machines or anything, which was a massive thing for us, because we didn’t want to make the decision to end her life. When the doctors asked about the organ donation, there was no question,” she says.
Kathleen’s kidneys, pancreas and liver were donated, and Smith has since received a letter from one of the recipients.
“They were very grateful . . . It was lovely after a good couple of months to see that somebody had benefited from it. We weren’t sure if her organs were going to be good to people, so it was a real comfort to find out they were.
“It’s a huge comfort to us as well, to know that even as she was passing by, she was able to give one last act of kindness, because that’s the way she was in life anyway,” says Smith.
Organ Donor Awareness Week is running until April 9th. See organdonation.ie