This Organ Donation Week, we’re encouraging people to talk to their families about organ donation to increase the number of lives that can be saved or transformed by a transplant. David Brown’s life was saved when he received a kidney from a deceased donor who had signed up to the organ donation register.
“I am so grateful to my donor to signing up to the register and to his family for allowing it to go ahead,” said David, a patient at the Royal Liverpool University Hospital who discovered in 2010 that he had polycystic kidney disease, a disorder where clusters of cysts develop within the kidneys, causing them to enlarge and lose function over time. Following diagnosis David was on dialysis before being on the transplant waiting list for two years.
It was two years to the day that I joined the waiting list that I received my transplant. I can’t describe in words how it felt to receive the call knowing I would get a transplant. When you’ve been on the list for that long you forget that it could happen.
A recent survey by NHS Blood and Transplant of adults in England found that while 84% agreed it was important to let those closest to you know your views on organ donation, only 40% had shared their organ donation decision with their family or partner.
“I’d spoken to my family even before I had my kidney problem saying that I wanted to be an organ donor. Most of my family feel the same. After I had my transplant and I was back home, I’d thank all of the people who wished me well but I’d also stress how important it is to have these conversations now.”
From spring 2020, the law around organ donation is changing in England and all adults will be considered as having agreed to donate their own organs when they die - unless they record a decision not to donate or are in one of the excluded groups such as those under 18 or who have lived in England for less than 12 months before their death. In the lead up to the change, it’s increasingly important for families to talk about their organ donation decision as even after the law has changed, families will continue to be approached before organ donation goes ahead.
Dr Norman Main, clinical lead for organ donation and intensive care consultant at the Trust, said:
We need more people to talk about organ donation to increase the number of lifesaving transplants. Knowing what a relative wanted helps families support their decision at a difficult time.
“While most people agree that it is important to talk to their family about organ donation, it is less likely that they will have actually had this important conversation. Because of this, sadly many opportunities are lost every year because families don’t know if their loved one wanted to be a donor or not. Please don’t wait. Speak to your family about organ donation today.”
Thanks to the wishes of David’s donor and the support of his family, David has been able to get his life back on track: “I’m doing great now. I’ve been exercising, going out when I want and enjoying quality time with my wife and family. I’ve been able to see my granddaughter grow up."
I don’t take things for granted, I look at things differently. I didn’t realise how sick I actually was until I look back now. I have wanted for a while to write to my donor’s family to say thank you – every time I tried I just got too emotional. But I think I will be able to do it now – to let them know how much it means to me.