Membership councillor Janette Roberts understands very well the ordeal many families go through while waiting for donor organs to become available as her husband Richard died while waiting for a heart transplant. It is one of the reasons she finds her work on the Trust’s organ donation committee so rewarding - and hopes that telling her story might make others think about joining the organ donation register.
“I am on the register and all my children are prepared to be donors. I think it’s such a positive thing to do,“ she said. Janette, of Meltham, Huddersfield, is starting her fourth year as a Membership Councillor. She was a night sister before moving into a career in education and her life-long interest in health prompted her to join our foundation trust. When it was mentioned in a meeting that a new organ donation committee was being formed at the Trust, she immediately expressed an interest. “I was working with the Royal College of Anaesthetists looking at organ donation and was also interested because of my husband’s experience of waiting for a donor. “Richard had a heart attack when he was only 37. He needed angioplasty but became seriously ill as they prepared him for theatre and they had to do a triple heart bypass.
He recovered really well and for many years led a normal, active life. “However in 1993 he needed a second bypass and did not recover from it. His health deteriorated and he was assessed for his suitability for a heart transplant. “This included looking at his lifestyle. If you are going to receive a donor organ it is such a precious gift so it is very important that you will treasure it and look after it.” After the assessment, Richard went into Wythenshawe Hospital and waited for a suitable donor but sadly his own heart gave up before that happened “In a strange way I still had a positive experience even though we weren’t lucky,” said Janette. “It was lovely to meet people who had been seriously ill and received new hearts and to see and hear how their lives had changed.“So my message to people is – the choice is yours but just think about joining the organ donor register.”
To join the register www.organdonation.nhs.uk or call 0300 123 23 23
A Lepton man, who is alive today because of a life-saving liver transplant, is urging others to join the NHS organ donor register. Neil Tarbutt, 61, suddenly became ill in September 2002, while on holiday in Rhodes. He was diagnosed with hemochromatosis, a condition where iron content is high in the liver. His condition deteriorated further, and he was told by doctors at St James’s Hospital, Leeds, that he would need a liver transplant.
Neil was put on the waiting list, and it was three months before he got a call from St James’s, saying a liver had become available. Thankfully, the transplant was a success and Neil was back at work at his garage in Nettleton Road, Dalton, after only three months. Now Neil and his wife Sue are urging others to join the NHS donor register. Neil said: “I know I am a lucky man. Without the transplant, I would not have lived to see both our daughter and son marry, or the birth of our grandchildren. Since the transplant, we try to encourage people to talk about organ donation, and to join the organ donor register.”
To join the register www.organdonation.nhs.uk or call 0300 123 23 23
When Elaine Young’s husband died suddenly from a brain haemorrhage she felt immense pride that through her grief and devastation she was able to carry out her husband’s wishes to help people after his death. She had been with John for 42 years (married for 36) since they were teenagers, and over the years, together with their three children, had openly discussed organ donation. John, a retired Group HR Manager at HBOS, had been a regular blood donor and his family always knew that if anything ever happened to him he wanted to donate his organs. Elaine, from Norwood Green, said: “When the doctor approached me, there was no decision to be made, John had made his feelings regarding organ donation very clear years ago and we respected his wishes. I know he would have been so disappointed if we hadn’t done what he wanted”.
After John died, his organs and tissues were removed at Calderdale Royal Hospital and Elaine later learned that there were 42 recipients, a young woman, who suffered kidney failure after having a baby and a 57-year-old father of two, the same age as John, was among them. It also helped that their children, Joanne, Michael and Andrew understood their father’s wishes. She adds: “At the time of John’s death I was trying to comfort the children and if I had had to persuade them about organ donation I don’t know if I would have been able to. The staff at the hospital were brilliant throughout, the doctor raised the subject very sensitively and I have never doubted, regretted or questioned that decision and we remain immeasurably proud of John.”
She said it was vital that anyone who wishes to become a donor makes sure his or her family and friends know of their wishes – or in some cases organ donation might not happen. She adds: “John was a very generous and giving person who felt strongly about donation and knowing that was a great comfort to us.” Elaine, who works at the West Yorkshire Forget Me Not Trust Charity Shop in King Cross Halifax, cherished their time together and sincerely hopes her story will encourage other families to have that all important discussion.
Olivia Glennie should have celebrated her 16th birthday last month (June 2014), she should have done her GCSEs and was expected to do very well and she should be planning her Prom night with all her friends. But in tragic circumstances last year the 15-year-old from Newsome - known as Livvie by her
family, tragically died leaving her family devastated. In the aftermath her parents first attended at Huddersfield Royal Infirmary and at the paediatric intensive care unit at Leeds General Infirmary where she was on a life support machine for five days and the time passed by in a blur. So when doctors asked them about whether they had considered organ donation they were shocked to be faced with something they never thought they would.
Her mum Diane, said: “We just thought if there was to be a shred of comfort at that time, to know that Livvie would be living on in someone else, and her DNA would be continuing in the world, then we wanted it to happen. It’s not an easy decision but it meant a lot to us at that time. We thought it gave Livvie a future which she no longer had. The couple went through the lengthy consent process supported throughout by the transplant specialist nurses who arranged for a treasured handprint of Olivia’s to be taken and framed. Diane added: “They were beautiful human beings both inside and out. They were always thinking of us when they were at work and when they were at home with their own families. We knew we could change our minds at any time but they were with us every step of the way. They are just what any family going through it needs.”
Then 16 days later, on Diane’s birthday, a poignant letter arrived from the Transplant Team. On the outside of the envelope it says only to open when the family feels ready. Inside, a letter told them three people had received Olivia’s organs – a mum in her 20s with a young child, a man in his 30s and a 13-year-old girl. Six months later and a follow-up letter told them the mum was doing “very well”, the man had been able to go on his first holiday in years and the 13-year-old girl had been making excellent progress. Another update will follow one year on.
Diane added: “When the letter arrived on my birthday it was as though Livvie was writing to me and that made it extra special. Some colleagues from school came to the house and Alex read it out to everyone. We were all in tears.” Alex said: “It gives us comfort knowing that wherever we are we could potentially be walking past the `13-year-old girl who has received her liver and that means a lot to us. If that girl goes on to have children then we know Olivia will live on too. We do hope that in the future we may meet all the
people Livvie helped.” The couple, who have two daughters, Laura and Lucy, are now facing the future with the support of friends and family. They have started fundraising and Diane will run the Jane Tomlinson 10K in Olivia’s memory. This summer a VW show will be held in Olivia’s memory at the Post Office pub at Junction 38 on the M1 and all proceeds will go to Eckersley House where the family stayed while Olivia was being cared for in Leeds General Infirmary. School friends have also had special wristbands made in her memory to raise funds and more than 350 have been sold.
They are comforted by Olivia’s friends who continue to visit them at home in Blagden Lane and her room has been left at the right level of teenage untidiness!! They are proud their daughter’s name is on the memorial to organ donors in the entrance at HRI and have an Olivia rose in their garden. Thoughts of the future are still very difficult but eased by the thought of Olivia’s legacy living on after they made that decision in the dark hours at Leeds GI. Diane added: “I would say to anyone reading this and thinking about becoming a donor then sign up and tell your family you wish to do it. If they are then in the terrible position we were in, it can help with the decision….. slightly. It will never be an easy one, it will always be heart-breaking but, for us, it made us feel better knowing Olivia will live on.”
Michael Moss has one big aim after an amazing recovery from a liver transplant – to get back on the first tee at Bradley Hall Golf Club, Halifax, and make a welcome return to his position of Corps Director of Anchormen Drum & Bugle corps, based in Elland. When his daughter, Sally-Ann went on Facebook to announce her Dad had come round after the 12-hour surgery he got 120 “likes” and 50 comments from his pals and their support, together with the support of his family has carried him through. Recalling those early post-op days in March this year, he said: “I received tremendous support from all of them especially my wife Anne and daughter Sally. I wouldn’t be here without their support; the strength from all of them was amazing.”
Michael, 71, from Friendly, Sowerby Bridge, spent six months on the waiting list after a consultation at Calderdale Royal Hospital confirmed his liver was failing badly after years of disease including colitis and sclerosing cholangitis (narrowing of the bile ducts). He underwent five days of tests to confirm he could survive and recover from the surgery. Throughout his time waiting he could never be further than two hours away from Leeds St James’s Hospital and when the call came he went in he had the operation within hours. He said: “The call came and they told me they were 99% certain it would be fine and I just went blank at that point. I knew it was a huge op and that it had finally come and I had a sense of shock and lot of relief at the same time.”
Yet almost immediately he felt the change – as his doctors predicted he would. He said: “The difference I felt afterwards – almost straightaway – was unbelievable. The doctors said I would notice it and I did. I just felt normal again as if all my health problems were now part of the past, I was me again, and I was back to how I used to be. The surgeons and staff at the Liver Transplant Unit at St. James’s Hospital Leeds were incredible
Mr Moss is now on monthly check-ups and a recovery programme of rest and activities to build up his strength together with anti-rejection tablets which he must take for the rest of his life. His consultant, Dr Ashwin Verma, at Calderdale Royal Hospital has cared for him for many years and Mr Moss says he has been excellent throughout monitoring his health and advising on the decision to go on the waiting list for a transplant. He knows only the basic details about his donor who remains anonymous. He added: “It is strange, as when you are on the waiting list as you are waiting, in effect, for another tragedy to happen to someone else. But I recognise that I have another chance and I am going to make the most of it to honour my donor’s memory.”
As a result of his transplant, many of his friends and family have now joined the organ donor register to become donors themselves. He added: “A donor has given me my life back. I would say to anyone who reads my story and thinking of joining the register then do it and also very importantly make sure their families know they are on it so if a difficult decision has to be made it is less traumatic for your loved ones.”
Little Ava Taylor
Little Ava Taylor
Little Ava Taylor is throwing (and running and jumping) herself into the summer 2014 Transplant Games – just 10 months after a life-saving liver transplant. The six-year-old from Golcar underwent a nine-hour operation at Leeds General Infirmary after doctors advised it was her best chance of leading a normal life after she was born with a very rare enzyme deficiency in her liver which could have killed her. At just seven months she was diagnosed with ornithine transcarbamylase (OTC) deficiency which means her body builds up dangerous levels of ammonia and need constant monitoring.
The call-up for the operation came just two days after her mum had been tested and given the all-clear as a match. Her mum, Caroline, a staff nurse in ICU at HRI, knew from early on that her daughter wasn’t developing the same way her older brother, Freddie, had and repeatedly went to her GPs knowing something was wrong. Eventually the condition was diagnosed during a visit to hospital and just before her fifth birthday Caroline was given the choice of whether she wanted her daughter to join the waiting list for a transplant.
Caroline said: “It was difficult as I had a choice. We could have carried on monitoring everything Ava ate and watching her so closely but she didn’t have the quality of life I wanted for my daughter. In the end I decided the risk had to be taken for Ava.” The family only know Ava’s donor was a 20-year-old man and at the start of the Transplant games in Bolton in there will be a lap on honour in all of the donors’ memories. She is one of the Leeds Little Livers team – all children who have undergone transplants. The family hope that soon Ava’s feeding tube into her stomach will be removed and the Transplant Games is the biggest sign yet their little girl is well on the road to recovery. Caroline adds: “She is a bright, little six-year-old and we can all look forward to her having a proper childhood now. Now she is learning more quickly and down the line she will be able to do normal little girl things like go to tea at her friends and live a normal life.
“The donor has changed all our lives for the better. It is impossible to over-estimate how grateful all our family are.” The family have written to the transplant team a thank-you and hope to hear eventually from the donor’s family. Through the family have been supported by The Liver Foundation and through the charity CLIMB – Children Living with Inherited Metabollic condition.
Cath Whitworth, a sister on the neonatal unit at Calderdale Royal Hospital, has won a clutch of swimming gold medals in World Transplant Games after undergoing a liver transplant. Cath, a mum-of-two had been given only a year to live before her operation and now she swims competitively as her way of saying thank-you. She said: “I had my transplant 11 years ago so I have had 11 years when I might not have been here and for that I am very grateful. Swimming is my way of saying a silent thank-you to my donor and her family in recognition of their generosity at such a hard and difficult time. Being part of the Transplant Games helps raise awareness about the value of organ donation and transplantation.
“There is much to do to bridge the gap between the need for an organ transplant and the thousands of people who die each year because one is not available.” She is backing our new campaign to raise the profile of organ donation throughout the Trust. Cath is now waiting to find out if she has been selected to swim for Great Britain in the World Games in Sweden next summer.
To join the register www.organdonation.nhs.uk or call 0300 123 23 23