‘The greatest gift of all’: the successes and pitfalls of organ donation

Three years ago James Nolan of Nolan's Butchers in Kilcullen, Co Kildare, went to the House of Lords to accept the most prestigious award of its kind in both Britain and Ireland.

The fourth-generation business received the champion of champions accolade from the Countryside Alliance. Having won best butchers in 2012, in 2015 it was judged also to be the best of the 10 previous winners of the award.

It was a proud day for the Nolan family, but one that would have been unthinkable but for the self-sacrifice of James Nolan’s sister Catherine 31 years ago.

In 1987, she donated a kidney to James. Now 51, James describes it as the “greatest decision any human being can make and that is to give the greatest gift of all, the gift of life”.

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The gift was transformational.

Before it, there was only sickness and visits to hospitals.

After it, normality.

“We always focus on the recipients and say that they are able to do this and that. I couldn’t do anything without my sister,” he says.

I knew nothing other than hospitals, diets and medications. That was part and parcel of my life from day one

He received his sister’s kidney on July 25th, 1987. Appropriately, he points out with a beaming smile, it was the Feast of St James. His was one of the first kidney transplants in Ireland.

James is an effervescent guy who has participated in 26 transplant games and has a sackful of athletics and golf medals to prove it.

By his own admission, he was “born sick”. Dialysis consumed much of his childhood. The process whereby a machine performs the functions usually carried out by the kidneys is time consuming and never ending.

Very hard

At 13, when most teenagers are navigating the perils of adolescence, he spent six months in St Vincent’s hospital. “I knew nothing other than hospitals, diets and medications. That was part and parcel of my life from day one,” he said.

“At 13 it is very hard to continually go back and pick up those pieces and slot back into normal. Then, inevitably, you go on to dialysis and that’s tough in itself. Your life is on hold. You are so limited in what you can do.”

In her career as a kidney surgeon, Dr Dilly Little has performed 800 transplants. She is one of four transplant kidney surgeons in Beaumont Hospital, which is the only facility in the country for such procedures.

Each transplant is unique, she says, but all have a uniting feature.

“I get to see the best of people where somebody either gives themselves through the living donor programme or a bereaved family who can see beyond the worst time in their lives to give a kidney,” she says.

At the end of 2017, Beaumont Hospital’s kidney dialysis unit celebrated 30 years with the unveiling of a stone monument outside the front. It features a model of a kidney on a stone plinth and the inscription “gift of life, a gift for a life”.

To date, more than 5,000 people have received a kidney, 2,800 of them are still alive. It is a good news health story, one of the best.

Before and after a kidney transplant is like night and day for patients.

“They literally look different,” explains Dr Little. “Their complexion is different. They will tell you their taste is different. Their dietary restrictions are gone. The diet that a renal failure patient has to have is very restrictive. Eating boiled potatoes and fish all the time is really rotten.

“When you come for a transplant, you may make no urine. When the kidney works, you can see the urine coming the minute you plug it in. The next day they may have made six to 10 litres overnight to clear out the toxins.”

This contrasts with the misery of renal failure which is non-ending. Patients are tethered to their treatment. Dialysis is a necessarily evil. It merely keeps the patient alive, it doesn’t make them better. “Often times it makes them worse,” points out Dr Little.

“Dialysis is all consuming. You feel unwell all the time and you have to go to hospital three times a week. If it works out for those people, it is literally life-changing.”

Kidney transplants are a procedure with an enviable record of success. Some 96 per cent of recipients have full kidney function a year after the operation.

The satisfaction for living donors, who constitute a quarter of all donors, is profound, but there has been one particularly high-profile failure.

Devastated

The GAA pundit and ex-Gaelic footballer Joe Brolly donated a kidney to a friend in 2012. The donation did not work and Brolly was devastated. He was also incredibly unlucky. Only about one in 100 kidney donations from living donors do not work.

“You can see the humanity in that,” said Dr Little, “but it’s not a slam dunk. The living donor puts themselves in harm’s way. It is a unique operation. The living donor has to acknowledge the risk they are in. Joe Brolly suffered serious disappointment. The living donor must go in with serious informed consent.”

Currently, the average patient is waiting three years for a kidney donation. For others it can be longer.

There are 139 patients on the waiting list who have made antibodies, either as a result of a previous kidney transplant or a previous blood transfusion or pregnancy. These are the hardest people to find matching organs for.

Dr Little compares the wait for a kidney to a plane circling a runway and being unable to land. “You’re just going round and round.”

Those on the waiting list have to be ready immediately for the procedure if a match is found. Dr Little wants the public to consider living donation and not necessarily for relatives. One does not have to be related to a recipient for a kidney to work. Of the 192 kidney transplants carried out in Beaumont in 2017, 51 were from living donors. But only one in eight living donors who come forward will be deemed suitable for transplant, so a bigger pool of potential donors is required. “The kidney transplant programme has achieved a lot,” she said, “but we have more to do”.

Even then, the chances of becoming a donor are about one in eight.

The clinic sees about 250 new referrals every year and 200 people join the transplant waiting list.

Ideally, if there were enough kidneys, Beaumont could do more pre-emptive transplants which involve having the operation before the need for dialysis sets in.

Nolan waxes lyrical about the “tangible appreciation of life” that comes from having a kidney transplant. For those in receipt of one, the gratitude to the donor or donor families is life long, he said. Things are never the same again.

“You will meet people who have overcome incredible obstacles in life. Most of them don’t complain. They just get on with their lives.”