Brother and sister have life-saving transplants within months

Sarah Watson had been on the organ donor list awaiting a life-changing kidney transplant for two years when she saw at first hand the difference the operation would make.

In April, her younger brother Tom underwent a transplant and by the time the 26-year-old got the call from St James’ Hospital in Leeds just four months later she had seen just how his life had been transformed.

“Tom had been suffering from chronic kidney failure for a year and had opted for a treatment called hemodialysis which uses a machine that directly cleans the blood,” says Sarah. “It’s a treatment which can now been done at home, but like many people Tom decided to visit the hospital.

“He had to attend the clinic three times a week for four hours per session. We were both at university at the time and it was exhausting for him. Pretty much as soon as he woke up from the operation, he said he could feel he immediately had more energy.

“Of course it’s major surgery and there is a long road to recovery, but the change was incredible.”

Tom underwent a live donation with a kidney donated by a friend of the Watsons, who live in Brough, near Hull. The procedure is becoming more common with the Human Tissue Authority (HTA), which assesses all proposed transplants, reporting that during 2012/13 it approved 104 cases of living donors, compared to only 38 in the previous 12 months.

However, while Tom was one of the lucky ones, no suitable match within their family and friends was found for Sarah and as the weeks turned into months, her condition worsened.

“I have been suffering with kidney disease since I was two years old, but in 2010 when I was 22 I was told it had developed into chronic kidney failure,” she says. “A year later I was then put on to peritoneal dialysis, which is slightly different to what Tom went through. All my treatment could be done at home either during the night by a machine while I was asleep or manually throughout the day.

“It’s seen as a more gentle form of treatment, but it still effects your body and you are really limited to what you can do.”

As Sarah’s condition worsened, she suffered from regular bouts of extreme fatigue. However, more unsettling than the various side effects, which can include high blood pressure, pain, loss of appetite and swollen limbs, was the knowledge that her future was out of her control.

Finding a match for the thousands on the transplant register has always been something of a lottery. While successive decades of medical breakthroughs means those who do undergo surgery stand a better chance of survival than ever before, the reality is that for many the wait will prove too long.

More than 10,000 people in the UK currently need a transplant. Of these, 1,000 each year – that’s three a day – will die because there are not enough organs. Sarah was well aware of the grim statistics, but on July 1 the call she had been waiting for came.

“It was completely out of the blue,” she says. “The team at St James’ called to say they thought they had a suitable organ and before we knew it we were on our way from Hull.

“As soon as we got there, I had to have a few tests just to be absolutely sure the kidney was a good enough match. It was.”

In transplant surgery, time is of the essence and within just a few hours of receiving the call, Sarah was being prepared for theatre as her family prayed they would be able to celebrate a double transplant success.

“I spent just over a week in hospital recovering and now I’m home where I’m getting better everyday thanks to someone’s generosity,” she says. “Organ donation may not be a cure for someone’s illness but it allows then some freedom and a chance to live a normal life for as long as the organ will last.”

While it’s only a few weeks since her operation, Sarah is determined to use her and Tom’s story to encourage people to sign up to the organ transplant register. Earlier this month, the Welsh Assembly voted through a change in the law which will see it become the first UK country to adopt a policy whereby individuals will be presumed to have given consent for their organs to be donated unless they opt out.

Supporters of the scheme would like to see England and Scotland follow the Welsh lead. However, while it seems like a sensible solution to the problem, the figures don’t necessarily stack up.

Evidence from other countries which have already adopted an opt-out system shows that the rise in the number of donations is small with around 15 additional donors provided each year and approximately 45 extra organs.

According to NHS Blood and Transplant, fewer than 5,000 people die every year in the UK in circumstances that would allow them to donate successfully. Many within the service believe that preventing families from overriding the consent of loved ones who have signed the organ donor register might have a greater impact.

In a strategy document released earlier this month, which also asked the question whether those on the organ donor register should receive higher priority on the transplant waiting list, the NHS said it aims to build on the 50 per cent increase in deceased donation rates since 2008.

Currently, almost everyone would accept a transplant organ if they needed one – but only 57 per cent of families agree to donation when asked. Those that overrule the wishes of patients, usually do so because they are not aware of their wishes, but the medical profession believes that there needs to be a wider behavioural change. Just as drink-driving became socially unacceptable, transplant surgeons want saying “yes” to organ donation to be the norm.

“We need to have a serious debate in our society about our attitudes – is it fair to take if you won’t give?,” said Sally Johnson, Director of Organ Donation and Transplantation at NHSBT. “Is it acceptable that three people die a day in need of an organ? Is it right to allow our organs to be buried or cremated with us when they could save or improve the lives of up to nine people?”

Back in Hull, the Watson siblings now have their sights firmly set on the future.

“Tom and I are now on medication for the rest of our lives to stop the body from rejecting our new kidneys and we have to look after our bodies as our immune systems are now down from the medication but this new found freedom is the best thing that could have happened,” says Sarah. “We are now both able to live our lives as actively as possible which is a lovely change from being tired all the time.

“I have just got a couple of exams to sit and then I will have finished my degree in philosophy, religion and education. Once that’s done I have my whole life in front of me and I plan to live my life as fully as possible – sky diving is very near the top of the list.

“When you come through something like this there are so many people you have to thank from the staff at St James’ who cared for me and Tom to everyone at Hull Royal Infirmary who looked after us through the different stages of our condition. I really do feel privileged that when we really needed help we had the support of two fantastic hospitals and some really wonderful staff.

“However, I also know that not everyone gets a second chance like we did. Many people have signed up for donation, but the sad truth is that the demand for transplants is greater than the amount of people who are willing to donate.

“I do think we need a proper debate about the value of an opt-in system, but while we are looking at options we need more people to join the register. I know that since Tom and I had our operations a lot of our friends and family have signed up.

“I honestly believe that if we can raise awareness of the situation more and more people will realise how important organ donation is and they might just give someone the truly amazing gift of life.”