MATTHEW MCNEIVE WAS diagnosed with prune belly syndrome when he was still in the womb.
The condition – also known as triad syndrome – causes among other things the abdomen to swell with fluid. The doctors were able to drain some of the fluid before he was born and Matthew survived.
However, as a result of the blockage his kidneys were damaged. His right kidney was removed 14 months after he was born. Matthew then went through a period of dialysis to ensure his second kidney could continue to function.
In 2009, at just the age of nine, his second kidney failed and he had to undergo nine months of peritoneal dialysis, which was carried out at home by his mother.
“I got a call then on January 2010 that there was a kidney for me,” Matthew told TheJournal.ie.
“So I went up to Temple Street then and that was great. Got the kidney. All went well then for about six years.”
Matthew’s body began to reject the kidney six years after the transplant, and it eventually failed in September 2018, just as he was due to start college.
And I’ve been on hemodialysis then since through a neckline in my neck, that I do three times a week at Beaumont Hospital for four-and-half hours each time.
In that time, Matthew has graduated university and is now a qualified cardiac physiologist. He’s from Knock but now lives and works in Dublin.
He needs a new kidney, but unfortunately as he has already had a transplant he has many acquired antibodies, which means that he needs a very specific match.
“At the moment I’ve had a few family members and a couple of friends that have all got tested,” said Matthew, but none have been a suitable donor.
He is now on what is known as a Kidney Sharing Scheme, which is being run out of Belfast City Hospital. Through the scheme, Matthew’s mother can donate one of her kidneys, and Matthew can in exchange receive a kidney from a separate donor.
“So my mother is not a match for me, but now she can donate a kidney to someone else and I can receive one from them.
So say you had a child [who needed a kidney] and you weren’t a match for them. My mother would give one to your child and you could give one for me.
Matthew has still yet to receive a suitable match, however. As a result his doctors have now started to “delist antibodies”, which essentially means he can have a broader scope of matches, but less of a suitable match in terms of longevity.
“But I’ve been five years on dialysis now come September. I just turned 25 so for all of my 20s I’ve been on dialysis. So I’d just take anything at this stage, you know?”
The importance of organ donation
Matthew has found it difficult to live a normal life as a result of his condition.
As well as the three sessions of dialysis a week, he has to adhere to a strict diet, avoiding potassium and phosphate. He also has to carry medication with him everywhere.
He hasn’t been on any extended holidays in five years, and has to avoid swimming unless he can be certain the water is clean.
“So you know for someone in their early to mid-20s not being able to go abroad with their mates… it’s very hard,” he said.
Matthew spoke with TheJournal.ie to highlight the importance of organ donation for Organ Donation Awareness Week. He has asked people to be sure to share their wishes at home with their loved ones if they want to donate organs when they die.
“There’s a lot of people who pass away and they haven’t shared the wishes at home,” he said.
“The parents or whoever, friends, family, sons, daughters will say no to giving their organs away, because they haven’t had that conversation at home.
That’s why our motto with the Irish Kidney Association and Organ Donor Awareness Week is to share your wishes.
Organ Donation Awareness Week is organised by the Irish Kidney Association (IKA) in association with the HSE’s Organ Donation Transplant Ireland (ODTI).
A total of 250 transplants were performed in Ireland last year, with 81 performed in the first quarter of this year.
Last year, the Government introduced the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022 to the Dáil. Under the proposed new law, an opt-out system of organ donation would be introduced to Ireland, which would increase the number of available organs for transplants.
The future
Matthew continues to wait for the call to come through that a suitable donor has been found, so that he can get the transplant and return to some semblance of a normal life.
“That’s the hallmark of dialysis, it’s just a waiting game really,” he said.
“We can’t do anything more. We’re really relying on the general public to become organ donors and kind of just hoping we succeed with this kidney sharing scheme.
“Otherwise you just have to keep going with the routine try not to think about it too much… Just keep positive and know that you kind of need the time on dialysis to appreciate the time when you have the transplant.
As we call it, it’s the gift of life. So once I do get the kidney I’ll have much more appreciation for going on holidays and being able to eat the food I want. You need the lows to appreciate the highs in away.
You can find out more about Organ Donation Awareness Week here
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