As Christmas approaches NHS Blood and Transplant is calling on families in Wales to talk about organ donation and register their decision to help save lives.
With some families hoping to get together for Christmas for the first time since the pandemic began, NHS Blood and Transplant is urging people to take a moment during the celebrations to talk about their organ donation decision and to leave their family members certain of what they want to happen.
There are currently 209* patients awaiting the life-saving gift of an organ transplant in Wales and many of their lives could be saved or significantly improved if a donor is found. Yet every day across the UK someone dies in need of an organ transplant.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHSBT, says:
“Wherever and however people in Wales plan to spend this Christmas, we hope that everyone will be able to enjoy the festivities and spend some much-needed time with family and friends.
“For many thousands of people across the country, including 101 people in Wales who have had transplants this year**, the only reason that they are able to enjoy a happy and healthy Christmas is thanks to the generosity of a donor and their family who so selflessly chose to give the gift of life. However, there are still thousands of people who are still desperately hoping and waiting for the transplant that will transform their life.
“Please take a moment this Christmas to let your family know your organ donation decision. Those conversations could help save the lives of people currently spending their Christmas waiting for a transplant.”
Even though the law around organ donation has now moved to an opt out system across England, Wales, and Scotland, many are still not aware that families will still always be consulted before organ donation goes ahead.
While families are more likely, and find it easier, to support donation when they already know it is what their loved one wanted, only 42% of the UK population have registered their decision on the NHS Organ Donor Register and just 37% say that they have shared their organ donation decision with their family.
Ray Sherry, from Cardiff, was diagnosed with primary sclerosing cholangitis (PSC) in 2005. He was in South Africa watching a cricket match and fell ill during the flight back to the UK.
He noticed that he become jaundiced and once at home he wasn’t able to rest. Doctors initially thought that Ray had contracted Yellow Fever but despite treatment he remained jaundiced and lost three stone in weight over a period of five months. Ray, who is now 58 years old, was diagnosed with PSC in the summer of 2005 which was affecting his liver.
Doctors were not able to tell Ray what had caused him to get the condition but was told need he would most likely need a liver transplant at some point in the future. He was put onto medication to deal with the symptoms of PSC, and he used sport to help him manage too, by staying as fit as he possibly could, knowing that it would help him when the time came for a liver transplant. Ray tried a number of sporting activities including running and kite surfing, but it was the discovery of a love for cycling which was transformative.
“I was smitten by the fact that I had found cycling. It was something that I could use to my benefit for fitness but at the same time it would have a cooling effect on my body which helped me manage one of the symptoms of PSC. It was a eureka moment for me. I bought a hybrid bike and entered a charity race. I was last across the line but it propelled me to get more into cycling. I was living with PSC but trying to endeavour with normal life as well.”
Ray’s love of exercise began to include running and swimming and he decided to take on Ironman events and triathlons, becoming faster and fitter.
However, in October 2020, Ray’s health started to be affected by the condition which he had been able to keep in check for nearly 15 years. He became more fatigued and noticed that he was jaundiced again.
“My liver function tests were beginning to deteriorate, and I was getting a little more indication that I was getting infections. I was seen by a consultant at the Royal Free to get a liver transplant assessment in December 2020 and by the end of the week I was told I was on the transplant list.”
Ray initially was offered a liver in February 2021, but it was found to be unsuitable. He had a successful liver transplant in March 2021.
“Up until that time I had never really thought about the donor and the donor’s family. Once I had the operation, I found I could not talk about the donor. Every time I wanted to talk about the donor I broke down. It was like I had lost a good friend.”
Ray saw a dramatic change in his skin colour with the jaundice fading within days and his medications are now being reduced. He is now back to work full time.
“This Christmas will be very different for me. Firstly, I need to think of my donor and the donor’s family and it’s a Christmas where I need to give thanks for being here. I’m looking forward to spending time with family and friends. It will be a celebration of life and a remembrance of those who made it possible.”
Anthony Clarkson adds, “We know that for many thousands of people across the UK, including 209 people in Wales, the greatest gift they could receive this year will be a phone call telling them that a donor has been found for them. Please let your family know your organ donation decision and leave them certain of your decision”.
For more information, or to register your organ donation decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23. NHS app users can also use the service to record, check or update their organ donation decision.