Transplant patient helps mark organ donation milestone

Swansea Bay dialysis patient, Stewart Cleaver, will never forget the life-changing moment he received ‘the greatest phone call ever’

At the time, the 39-year-old from Neath was in poor health, because of Polycystic kidney disease, and undergoing gruelling dialysis treatment three times a week while on the transplant list.

Then came the phone call, on 19th November, 2012, that proved truly life changing – he was to receive a kidney transplant.

Recalling his quality of life before the transplant, Stewart said: “When I first went to hospital for dialysis they put a needle in my vein, set the machine and walked off leaving me there for two hours. I said, ‘I’m not doing this ever again.’ The doctor told me I had two choices; either have dialysis or I was going to die.

“Alongside it you get these other illnesses because the kidneys don’t function properly.

“I had a lot of illnesses, including a heart attack and brain haemorrhage, and was in and out of hospital prior to the transplant. I was unwell”.

Stewart is sharing his story now to help mark the 10th anniversary of The Human Transplantation Act (Wales), known as deemed consent, which means you will be treated as if you have no objection to your organs being used to help another person in the event of your death – although doctors would not do so against the wishes of your immediate family. 

Stewart also hopes he can encourage people to consider organ donation, and to make their wishes known now to their family and loved ones to avoid painful decisions should the situation ever arise.

“The five months I had dialysis was the worst time,” he added. “I was leaving work to go to the hospital and would have treatment until 9pm and then get home for tea. That was every Monday, Wednesday and Friday for five months.

“It was a bit of a chore.”

Then came the call, out of the blue.

Stewart added: : “It was the greatest phone call ever! I was on my way to dialysis when I had the call to say there was a transplant team in Cardiff waiting with a kidney.

“I couldn’t believe it at first. You can’t get your hopes up too much in case it’s not a match.

“But it was fine and the doctor said they could do it there and then.”

Stewart wasn’t told the identity of the donor.

He said: “All I knew was it came from a lady in England in her late 40s. That’s all they said. I was able to send a thank you letter to her family.

“When I came around after the transplant, I felt really well straight away. It was amazing. I thought I had received a kidney from a bloke but when I found out it was a woman, I felt really emotional. I don’t know why.

“It’s a surreal situation to be in but it’s such an appreciative moment – you can’t explain it really.”

Now he is living testimony of how organ donation can transform lives.

He said: “There’s lots of people out there suffering, who are desperate to lead a normal healthy life, and your decision to allow your organs to be used after you have gone can make such a difference.

“Organ donation saves lives. It really does. It can give someone a better quality of life for years, which, otherwise, they would never have had.

“It doesn’t just help that person, it also helps their families – their children, husbands, wives, partners, grandparents. My missus went through a terrible time. It’s a huge change and a massive help.”

Stewart is not alone with more than 44,000 people across the UK benefitting from deceased and living donor organ transplants in the past decade.

However, there is always room for improvement as 217 people have died waiting for an organ transplant in Wales over the past ten years because they didn’t receive the lifesaving organs they desperately needed in time, new figures reveal.

Closer to home there are currently 137 people on the transplant waiting list in West Wales and 123 referrals this year so far to be considered for transplant.

There have been 40 transplants so far this year – 16 from living donors and 24 deceased.

Kathryn Gooding, Specialist Nurse Organ Donation in Swansea Bay, said: “The legislation around deceased donation changed in Wales on December 1st 2015, when we moved to ‘deemed consent’.

“You can still opt in or opt out on the Organ Donor Register but it means that if you are an adult that has not registered a decision around organ and tissue donation, it will be explored as part of your end-of-life care.

“It is really important your family and loved ones know what you want, regardless of whether you are registered or deemed a donor, to help support your decision.” 

Kathryn said that it is a conversation that can benefit so many people in many ways.

She said: “The decision to become a donor can save up to nine lives and enhance many more. Our donors and their families are incredible. Organ and tissue donation doesn’t only save or improve the life of someone who needs it, but it can leave their family and friends a legacy of love and giving.”

Swansea Bay Transplant Recipient Nurse, Melanie Pickman, was keen to praise all donors and their families.

She said: “I think the only quote that always comes to mind is thank you! Thank you to our selfless donors and their families.

“Their gift has saved a life, a family.

“They are the heroes. Our patients cannot write the next chapter without them.”

Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “It’s really concerning to see the numbers of people waiting for a transplant slowly rising and people are dying needlessly every day because of the shortage of organs for transplant. We really need people who want to be a donor after they die to make it clear to their families and encourage them to support that decision.

“Last year, 90 per cent of UK families honoured their loved one's decision to become a donor when they had recorded their decision on the NHS Organ Donor Register, which made those conversations with families so much easier. People are far more likely to support donation when they know it’s what their relative wanted.

“I would urge everyone in Wales who supports organ donation to register their decision and make it clear that it’s what you want should the worst happen. It only takes two minutes to register but it could save the lives of people who so desperately need a transplant. Please sign up. It’s the best thing you’ll do today.”

To find out more, and confirm your support for organ donation, visit: www.organdonation.nhs.uk, call 0300 123 23 23