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Save lives by carrying a transplant donor card
THERE are many reasons why Oxfordshire residents can be proud of the contribution they make to transplant services.
An impressive 42 per cent of Oxfordshire people – some 268,164 – are on the organ donor register.
That was helped by our two-year Gift of Life campaign, started in 2008 which encouraged people to join the NHS Organ Donor Register.
That saw 20,000 extra people sign up, taking the Oxfordshire total to almost 200,000.
And the city boasts world-class health facilities at the Churchill Hospital’s Oxford Transplant Centre, which takes patients from Oxfordshire and those further from afield.
But life is not easy for those awaiting a transplant.
Churchill consultant transplant physician Dr Paul Harden said: “If you have a rare blood group and tissue type you might wait a long time.
“It is what is the best match for you. It is a bit of a luck of the draw.”
While NHS leaders have praised donor numbers – the 4,655 UK transplants in 2013/14 was 10 per cent up on the previous year – there are still challenges.
Latest figures show 66 people in the county are waiting for a transplant. Of those, 54 patients are in need of a kidney.
In 2012/13 there were 33 transplant operations for Oxfordshire people, with between 25 and 32 in the previous four years.
The service carries out kidney, pancreas and small bowel transplants – not liver, heart and lungs. It sees about 1,000 people a year from across the Thames Valley, through surgery, dialysis, advice and check-ups, such as blood tests.
It carries out 130 kidney and 70 to 80 kidney and pancreas transplants a year, while patients from as far away as Cornwall come to Oxford for rarer pancreas transplants.
Dr Harden said: “Oxford is a small city and it is unusual to have a big, tertiary teaching centre with so many specialities.
“People in Oxfordshire benefit hugely from having such a comprehensive medical centre that can do most things.”
Among those it has helped is Headington father-of-two Barnaby Kemp, 41, who got a kidney from dad Tim, 76, in 2001, and 45-year-old sister Victoria Hellon in April, after his body rejected the organ.
The coffee firm boss, diagnosed with kidney disorder focal segmental glomerulosclerosis in 1999, said: “More people I speak to are considering donating organs, specifically to family or friends. There is much more awareness of it.
“For the donor it can be an incredible experience.”
While success rates are high – the risk of dying after a kidney transplant is one per cent – the experience leading up to a transplant can be tough, he said.
“The trouble is, by spending time in hospital you are around death. I have been on various wards where I have seen five, maybe six, people die on the wards.”
A major advance in transplant science is the emergence of living donors – those who give organs while alive – and, in the case of family members, this gives a high probability for a good genetic match.
Drugs which suppress the immune system – so the new organ is not rejected by the body – are among recent huge advances in medication.
Mr Kemp said: “This time has been incredible, particularly because my sister is a better match and because the drug therapy has improved. It is brilliant.”
The Oxford Transplant Centre opened in 1974 and Dr Harden said concentrating expertise in one place is vital, even if it means some patients have to travel from counties like Buckinghamshire, Wiltshire and Berkshire.
Dr Harden said: “Because renal disease is rare, primary care physicians [who work in the community] are less familiar with looking after patients.
“Some GP surgeries may have only one patient.
“They often get complications such as high blood pressure and anaemia, and our expertise is there to manage that.”
The Churchill is also a focal point for about 50 young people, who can suffer great emotional distress as they approach adulthood.
“There are so few of them, the idea is to pull together to have a support group,” said Dr Harden. “The problem is they are very isolated because there are not many of them.
“If you are 17, 18, about to go to university and you suddenly need dialysis and a transplant, it tends to mess lives up a lot.
“Often they drop out of university and what tends to happen is they have a large denial phase. They don’t accept there is a problem, they can get very angry and ask ‘why me?’ “They may lose their job or not get a job and struggle with relationships.
“It is quite a depressing thing to happen to someone of that age.”
He added: “If you can meet someone who has been in there and come out the other end and is getting on with life after transplant, then that can help tremendously.”
Organ recipient Joe Dunster, 34, visits the Churchill twice a week to support young people as he knows only too well the struggles they face.
His nephrotic syndrome – where protein leaks into urine – was spotted when he was two.
But he only developed full kidney failure aged 18, before getting a transplant two years later.
Suffering tiredness, a low immune system that made him susceptible to infections and muscle cramps, he needed dialysis at home three times a day and later overnight dialysis for 12 hours.
The Ealing, West London, youth worker, formerly from Chichester, West Sussex, said: “That whole period was a horrific experience to be honest.
“I knew that transplants did happen on a fairly regular basis but it was the not knowing when the call might come, you are always on tenterhooks.
“Without my family I don’t think I would have kept on.
“I want to help other young adults who don’t have that support.”
He said of his work with kidney patients aged 16 to 30: “The issues we find is lack of family support, depression, they are out of employment and education, they struggle financially.”
He is the Team GB squash captain for Transplant Sport, which brings together people who have had transplants, a role which put him in touch with medics in Oxford.
The Bournemouth University marketing graduate said: “I have gone back and done my studies, I have travelled around the world, I play sport and keep fit and active.
“I can make a good life of the condition.”
Richard Zimmerman, 30, was given a kidney by mother Carole, 60, last month at the Churchill, though he had been waiting since the age of 21.
He had to wait until his kidney failed before he had the transplant and suffered symptoms like extreme tiredness and itching.
The Sony product manager, of Lambourn, Berkshire, said: “It has been pretty tough, the last year has been really hard.”
He is now looking forward to starting a family with his wife of four years, Chloe.
“I probably rushed through life a little bit. I have always thought ‘it is not going to hold me back.’ “That has a downside. When you take on that attitude you don’t talk about it and people don’t know what you are going through.”
He said of his mother’s gift: “You can’t put a price on it.
“One of the things I struggled a lot with was how do you repay something like that and you have to remember you can’t. It is a gift beyond value.
“It is a case of making sure you get on with life and live it to the full.”
A key message of this year’s National Transplant Week – alongside the ongoing call for more donors – is the need for people to discuss with their families what to do with their organs if they die.
Dr Harden said: “It is very important that people explain to their family and friends what they want to do if something unfortunate and dreadful happens to them. The next of kin can very strongly object.”
Four in 10 families do not give permission for their loved one’s organs to be donated when approached, NHS Blood and Transplant has said.
Yet Dr Harden says advances in science have put medics in a strong position to turn peoples’ lives around.
It is “remarkable” the first kidney transplant was 50 years ago, at Peter Bent Brigham Hospital, Boston, United States, he said.
“The results are really very good and the chance of somebody dying after a kidney transplant is about one per cent.
“What was a very exceptional thing 30 to 40 years ago is very much a routine process.”
Director of organ donation and transplantation for NHS Blood and Transplant Sally Johnson said: “To help more people we need everyone, even if you’re one of the 268,164 people on the NHS Organ Donor Register in Oxfordshire, to tell those closest to you that you want to donate your organs. Please have the conversation and spell it out.”
- Anyone of any age or health history can join the NHS Organ Donor online at organdonation.
- nhs.uk or call 0300 123 23 23 at any time.
- Donors can also text SAVE to 62323 or sign up when registering for a driving licence at a GP surgery or for a European Health Insurance card or when applying for a Boots Advantage card.
- The NHS says carrying an organ donor card is not necessary but “many people like to keep one to remind themselves of their donation wishes, to help start a conversation with family and friends about their decision to join the register or to encourage others to think about organ donation”.
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