Over a hundred facing Christmas on the waiting list for an organ transplant.
Health / Mon 9th Dec 2019 am31 07:30am
118 people in Essex 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 Essex 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*.
Julie Bartlett, aged 58, has been waiting for a heart transplant for nearly three years, and has been on the urgent list for 300 days today (Tues 3 Dec).
The mum and grandma from Nazeing says: “Waiting for the call is the toughest thing I’ve ever had to endure in my life. You just can’t explain what it’s like being apart from family and friends, my sausage dogs and my home and home comforts like my bed and home cooked meals for so long.
“It impacts every moment of every day and night, as you constantly and desperately expect the transplant coordinator will come bearing news.
“I spent Christmas 2016 here in hospital recovering from my Ventricular Assist Device surgery but last Christmas was my twin grandsons first Christmas and that was a blessing.
“Waiting for a transplant at Christmas is just like waiting any other day, a gift of life on Christmas Day, wouldn’t that be the greatest present?
“I’m being positive and hoping that Christmas this year will be a repeat of 2016 and I will be recovering from my transplant surgery but it may well be yet another day waiting for the call.
“I know that the nurses make a very special effort with traditional Christmas lunch, the staff make it very festive. Family are invited to join in. Volunteers came in and sang carols on the ward and it was beautiful and emotional. I’m looking forward to sharing Christmas with the team that have cared for me here, they really are extra special in every way – the NHS should be very proud.
“I love all of Christmas. I’m going to miss putting up my tree and all the decorations which have sentimental meanings.
“A transplant would give me my life back again, I have so many plans for the future with my family and friends. At the moment it feels like my life is on ‘pause’.
“A transplant for Christmas would make this impossible year as an inpatient worthwhile and a perfect way to end a whole decade since I was diagnosed with familial hypertrophic cardiomyopathy. I’ve spent the last decade in heart failure and I want to begin a new decade with a new heart and a new life.
“I will be able to spend time that I’ve missed out on this year with my daughter and twin grandsons, I’ve missed almost a whole year of their little lives already, they’ve grown so fast. Also travel and visit my son and granddaughter in Australia, I haven’t seen her since her first birthday. I can’t do any of those things now, I can’t even go outside the hospital.
“I think all donors and their families are extremely kind and brave. Donors who choose to give their organs will never know what a life changing or lifesaving impact their decision has made to their recipient.
“The families of those donors, who ultimately make that final decision, during the most difficult of times, will hopefully find some comfort in the knowledge that their loved one lives on and has made a difference to someone’s life.
“My hope for 2020 is the start of my new life in a new decade. Free of heart failure and mechanical gadgets of which I have been most grateful.
“When I get my transplant, I will be thinking of my donor and their family first. I hope to find some way of showing them my gratitude for their bravery and thoughtfulness in agreeing to organ donation.”
Harefield Hospital’s director of transplantation Andre Simon said: “On the transplant unit at Harefield Hospital we frequently see how a person’s life can be completely transformed through the gift of organ donation.
“Discussing organ donation with families and loved ones could mean the difference between life and death for someone on the transplant waiting list. We encourage everyone to make a new year’s resolution to have these conversations and to sign the organ donor register, so we can help more patients like Julie.”
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 Essex 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.”
From spring 2020 in England and Autumn 2020 in Scotland, the law around organ donation is changing. All adults in Essex 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 Essex 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.