How to be an organ donor: ‘The surgeon said he wasn’t going to take my kidney out if I wasn’t sure’

Kidney transplantation is one of the great successes of modern medicine, yet the search for donors is often fraught with difficulty as very sick patients wait for an organ that will be a blood type and tissue match.

This wait can sometimes be too long and some patients die waiting for a kidney transplant that could have prolonged their lives. Yet, studies have shown that all fit and healthy people can manage very well on just one kidney, as the remaining kidney increases in size and capacity and carries out the functions of two kidneys.

So-called altruistic donors are likely to be permitted here once the Human Tissue Bill is passed into legislation, but there is currently no provision for them in Irish law

In Ireland, most donated kidneys come from deceased donors (preliminary figures from the Organ Donation Transplant Ireland reveal that about one in 50 of all kidneys donated came from living donors in 2022), yet in the long term, live kidney donations are deemed better than deceased kidney donations.

A kidney donated from a living person is better because the transplant can be planned in advance, tissue matching can be better and the donated organ spends less time in storage. Sometimes, recipients can even avoid dialysis when a matched living organ is ready.

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In Ireland, only family members or close friends who are found to be a match can donate a kidney to someone who needs it. And while so-called altruistic donors (people who are neither friends nor relatives of the person seeking a kidney) are likely to be permitted here once the Human Tissue Bill is passed into legislation, there is no provision for altruistic donors currently in the Irish system. Altruistic donations take place in several countries including the United Kingdom, the United States, Australia, Canada, Sweden, Spain and the Netherlands.

Philip Butler decided he would like to donate his kidney, but then quickly realised that so-called altruistic donations weren’t possible to do in the Republic.

“It was just something I wanted to do,” explains the 74-year-old. “I’m the youngest of six children and there is only myself and my sister left. The rest of my siblings died of cancer, so I guess I feel lucky in some way.”

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Chatting in his Co Wicklow home, Butler appears bright and healthy – not like you might imagine someone to be who, just three weeks earlier, had surgery to remove a kidney which was then donated to a 60-year old man on dialysis for the previous two years.

His good mental and physical condition – he walks up to 4km each day – is remarkable but that he volunteered to donate one of his kidneys to someone who is neither a relative nor a friend is astonishing.

A lifelong blood donor, Butler discovered how to realise his ambition to donate a kidney when, in May, 2022 he heard a woman on the RTÉ One radio Liveline programme talking about being an altruistic kidney donor at Belfast City Hospital. Following the broadcast, he contacted the hospital.

“There is no age limit to donate a kidney. I’ve heard of an 82-year-old blind woman who donated one of her kidneys to her brother,” he says.

Clearly fascinated with the process, he kept precise notes of the timeline of his procedure from the first contact with the organ donor co-ordinator at Belfast City Hospital, through day-long tests and assessments, meeting the surgeon, having his bloods double-checked at Beaumont Hospital in Dublin once a match was found right up to the operation to remove his left kidney in early January 2023.

“After all the tests, they told me that I had a biometric age in my mid-50s and my kidney function was that of a 30-year-old,” he says proudly. Following an initial meeting with the surgeon who would remove his kidney, Butler had a mandatory meeting with a representative from the Human Tissue Authority (HTA) to ensure that he wasn’t being coerced in any way to donate his kidney.

“The surgeon told me that my health was paramount to him and that he wasn’t going to take my kidney out to give it to someone on the transplant list if I wasn’t sure. Then the HTA went through everything again to check that it was voluntary,” explains Butler.

‘I feel we got more out of the experience that we put in. It changes you. I see things differently now. I have more empathy and feel more contented’

Following the 2½-hour surgery to remove his left kidney in Belfast City Hospital, Butler has no regrets. He recalls how there was a cool box at the end of his bed as he was being pushed down to the theatre. “The kidney was sent by private plane immediately afterwards and two days later, the kidney donor co-ordinator told me that they had got an email to say the recipient was doing well. That was my prize. I was elated when I heard that.”

Butler’s wife, Sheila – who accompanied him to Belfast and stayed in the paid-for serviced apartment near the hospital before, during and after her husband’s surgery – said that they both felt emotional when a match was found for his kidney. “I wasn’t going to talk him out it as it was so important to him. I never thought anything terrible would happen because he looks after himself so well,” explains Sheila.

Butler adds: “Sheila has supported me through all of this. I wouldn’t have done it without her or without all the family.” An avid orienteer and runner in his younger days, Butler began resistance training six months before the surgery to be physically fit for the operation.

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The couple even made some friends on the hospital ward who they plan to keep in touch with. “The man in the bed next to me was a deceased kidney transplant recipient who remained on dialysis for the four to five weeks afterwards and there were two friends – one a donor and the other a recipient there too,” says Butler.

Now as he recovers at home, Butler is looking forward to going back to his work as a self-employed services engineer. “Sheila drives me everywhere. I can’t work until the end of March because I was told to take plenty of rest, drink lots of water and not to lift anything heavy for a couple of months.”

And while not intending to donate any other organ (in reality, a part of his liver is the only other organ he could donate), he wants to inspire other people to donate a kidney.

“I feel we got more out of the experience that we put in. It changes you. I see things differently now. I have more empathy and feel more contented,” he says.