99 people in County Durham are facing Christmas on the waiting list for an organ transplant. They join more than 6,000 people across the UK, including over 180 children, awaiting a life-saving gift*.
Families in County Durham are being urged to share their organ donation decision this festive season, so that their loved ones know what they want when they die and more patients can receive the transplants they need.
There are currently 6,186 patients in need of an organ transplant in the UK, and 185 of them are children*.
Aaron Mellis, aged 31 from County Durham, was on and off the waiting list for three years before he received a heart transplant in the spring. He has also had a stroke while he’s been unwell and has been supported in telling his story by his girlfriend, Amber Hagan.
He says: “Waiting for transplant is horrible, you’re waiting for something you wish you didn’t need but you have no choice because without it you’ll die. When you get your head around the fact that you have no choice, you start to hope you get your gift only to realise how likely it is you’ll die waiting for it because of the lack of donors.
“In 2016 I was placed on the urgent transplant list and had to live in hospital on 24 hour infusions of medication. I was 27 and my life was gone. I didn’t get my gift in time and later that year I ended up being in a coma and was given an L-VAD device in the hope that would keep me alive until my transplant.
“My recovery was long and tough and unfortunately I had a lot of complications with the L-VAD but it was the only thing keeping me alive.
“Whenever I was at home we could never turn our phones off or really stop hoping/thinking that the call might come – which it did three times but they never went ahead.
“It’s a constant battle in your own head to know how badly you need a transplant, accept that it just might never come and to get over the guilt of knowing someone else will need to pass away for it to happen.
“I’ve spent some Christmasses in hospital then last year was lucky enough to be given leave to spend it at home. It was amazing but impossible to forget for one minute that we were just hoping our day would be stopped by a call because especially last year we knew how much time was running out.
“When I got the call I text Amber to say I think they have found me a heart. This time it felt different. The feeling is too hard to put into words, the emotions are so muddled up. Amber was terrified but I wasn’t, I knew I would survive, I just felt it.
“It’s a mixture of the highest level of hope for us and our lives and the strongest sense of sorrow, guilt and heart break for another families lives. What was possibly going to be one of the best days of our lives would be coming from the worst day for someone else. We found ourselves saying thank you later that night, thank you to my donor and their family and you wish so much you could tell them face to face what their decision has meant.
“Words really can’t describe it, it’s too surreal. It really is a miracle that not only had a stranger somewhere been willing to donate their organs but that they were a perfect fit for someone who needed them, how did we get so lucky.
“We think about my donor family every day, we talk about my donor a lot. I want to live my life for my donor and their family. I want to do things and go places and a part of my donor will be there with us forever. I owe my life to their loved one and to them for allowing it to go ahead, we owe them everything.
“I am still very much recovering, but already I can do more than I’ve been able to do for years. I go to the gym regularly, I can walk for any distance without getting out of breath – I’m never out of breath now which is something that s amazing and I could never have imaged. I can go swimming and get a bath. We can plan holidays, plan getting married and actually imagine our lives being ‘normal’ again. Even at this early stage, the difference since before is worlds apart. We have hope now.
“I’m most looking forward to being able to just enjoy Christmas without having to keep our phones on loud and close by. Just being able to be normal is enough this year and more than we thought possible! We know my donor and their family will also now be part of our Christmas celebrations and we will be thinking of them.
“In 2020 we will be allowed to go abroad so that’s definitely a plan, we can start to rebuild our lives and get back on track with future plans. Since I became unwell suddenly in 2015 our lives were put on hold and since that day they haven’t ever got properly moving again, until now when things really are looking up.
“We feel so lucky and so grateful to have this second chance. It probably seems quite boring that the things we are most looking forward to are very simple , just being a normal couple but when that’s been taken off you all you want is normality back.”
Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “Christmas is an incredibly busy time of year, however away from the rush and bustle of preparing for the holiday it should also be a time for family and thinking of others.
“We are urging everyone in County Durham to take a moment to think about the people who will spend their Christmas hoping for just one thing; a life saving organ transplant. Would you like to help if you could? If you needed a transplant, would you want someone to donate to you?
“Please let your family know what your organ donation decision is so that we can save more lives. Every precious organ donor allows more families to spend special times together.
“A quick chat can save lives, and we know that even at a time of grief families take enormous comfort and pride from their loved one’s donation.”
Keith Buckley, aged 74, from Nottingham, sadly died in December 2015 after falling off a ladder while putting Christmas lights up at his home. The retired fire officer suffered a serious head injury, his kidneys helped two people. His daughter, Jane Stubbs, is facing her fifth Christmas without him but gains comfort from the fact that he saved lives by becoming an organ donor.
Jane, from Nottingham, said: “It was unexpected and was absolutely devastating. I never imagined something like that would happen to my dad. You think they are invincible. It was the last thing we thought we would have to be dealing with at that time of the year. There is never an easy time to lose someone, but Christmas just seems even worse.
“Something positive had to come out of something so tragic and it was what my dad wanted. My dad had never talked about organ donation or dying but I wish we had talked about it. He had already signed up to the organ donor register, but I wonder if he ever thought it would apply to him?
“You just want to make sure you are doing what he wanted, and I would not have gone against his wishes. There is nothing to fear by allowing your loved one to be a donor. Our experience was amazing. The hospital staff were so caring and compassionate. Nothing was too much trouble. They made the whole thing more bearable.
“Both of his kidneys were used and two people received those.
“I hope they spare a thought for my Dad and for us and raise a glass or two to his memory. I hope they make the most of every day. It makes me feel proud knowing my Dad helped them to live. I don’t want them to feel guilty though – I know some recipients do – just carry on living.
“You try and focus on the positive happy memories, but it is hard. I miss him so much. We never got to say goodbye or tell him how much we loved him. As a family we will spend time together this Christmas. Life goes on. I love to talk about him and tell everyone how proud I am of him.
“Family at Christmas was very important to my Dad. He liked to have the family around him at that time of year. It was an opportunity for us all to come together, to have a laugh, and make some happy memories. He absolutely doted on his two grand-daughters. We love to talk about our family Christmas memories, particularly when I was a child and the things we used to do.
“I would urge everyone to have the conversation and to make sure they sign up to be an organ donor. If your loved one agrees to donate their organs make sure that you abide by their decision when they pass away. It’s not about your needs, it’s about what they wanted to do. I fully support the new legislation – most people would expect or demand to receive an organ if they or a loved one needed one. You should therefore be prepared to donate.”
From spring 2020 in England and Autumn 2020 in Scotland, the law around organ donation is changing. All adults in County Durham will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate, known as ‘opt out’, or are in one of groups not covered by the new organ donation law. This system was introduced in Wales in December 2015 and in Jersey in July this year.
Families will still always be involved in organ donation, so it is vital that they know your choice. In the lead up to the change in law, NHS Blood and Transplant is urging families in County Durham to talk and share their decision. If the time comes, families find the organ donation conversation much easier if they already know what their relative wanted.
To find out more look out for the new TV advert, which explains more about the law changing in England next year and launches over Christmas. There is more information at www.organdonation.nhs.uk, where you can also join the NHS Organ Donor Register, amend your details and more.