FOR three afternoons a week, assistant marketing manager Claudia Bell makes the most of her flexible working, diligently logging into her laptop and responding to the inevitable swathes of e-mails gathered in her inbox.
Her virtual office is a lively one, bustling with people and full of equipment – though not the usual telephones and photocopiers. While she gets on with her correspondence, Claudia is hooked up to a dialysis machine at the Western General Hospital, cleaning her blood of the waste products her kidneys would usually filter out.
The 52-year-old is one of more than 150 people in Edinburgh on dialysis and in need of a kidney transplant. With the average wait being 1000 days, she is keeping herself busy during the four-hour treatment sessions that have taken over her life for the last four years.
It all helps to distract her from the hereditary illness that killed her father Joseph and leaves a question mark hanging over her son Ryan’s future health.
When she was in her early-20s, Claudia was diagnosed with polycystic kidney disease – a condition where cysts develop on the kidneys, gradually taking over and then causing the kidney function to deteriorate.
Her illness has become so severe that, in addition to thrice-weekly dialysis, Claudia had one of her kidneys removed, hopefully leaving her ready to receive a new kidney as and when an appropriate match can be found.
“Dialysis takes over your life. You have to arrange things around it,” she explains.
“It’s like being a hamster on a wheel. You go from work to dialysis, home, sleep and then you’re back on the wheel again but it keeps you alive.
“I’m lucky that I have a very flexible employer and I manage to do some of the work at dialysis so that helps.
“I had the choice to get the kidney out and go on dialysis at the same time. I felt I wanted time to get used to dialysis before I went through a totally life-changing situation.
“I also felt it was much fairer on my family as my son was obviously a bit younger than he is now and I didn’t want to be out of circulation for too long.
“It’s not just you that goes through dialysis, it’s your whole family. My husband tries to arrange his shifts around taking me to dialysis.
“You’re tired an awful lot so you need help in the house and things like that. It’s not just you as a patient that goes through that but your extended family as well.”
And while Claudia, of Carrick Knowe, would dearly appreciate a donor kidney to ease her own complaints, her primary drive to raise awareness stems from how it could eventually help her son, should the worse happen. In a few years time, he will have to undergo tests to see if he could endure the same problems as his mum, which would likely see him on the transplant list eventually too.
The strong bond between herself and 18-year-old Ryan is even more evident when she explains why she switched her dialysis from Saturdays.
“I’m an avid Hibs supporter and I had to change my dialysis so I can still go and watch the Hibees.
“It’s normally just my son and I that go and it’s mother and son time. It’s the one place I totally switch off. I’m not very happy quite often as you can imagine being a Hibs supporter but I do really enjoy it.”
Kidney disease is a growing epidemic with the prevalence of patients presenting with kidney failure increasing consistently by four per cent each year. The number of people being treated for kidney failure in the UK has risen every year since 2006 with one person dying every day while waiting for a transplant.
Side effects of dialysis include exhaustion, cramps, and in Claudia’s case, low blood pressure. Fluid intake is strictly controlled with dialysis patients only able to drink between 700ml and a litre a day.
The longer a patient is on dialysis, the less efficient it becomes and the side-effects start to increase. Receiving a live transplant is far more reliable so in addition to family, one colleague at work was tested but was an unsuitable donor while another is in the process of seeing if he can help.
“I’m extremely grateful to him, when someone throws you a lifeline like that, it is emotionally overwhelming,” she adds.
“What I would like to see happen is an opt-out rather than opt-in system like other places in the world. I think that would also help those in the unfortunate situation who are being asked to make a decision at what is a very traumatic time for them anyway. I believe it would help the families of those who have to say yes or no and it would increase the chances of a lot of people in a similar situation to myself, to get their lives back.”
One person to feel the difference a transplant can make is Edmund Brown, pictured left, who is about to celebrate the one-year anniversary of his kidney transplant.
He was on dialysis for nearly 11 years before getting a phone call he was initially reluctant to answer, early one Saturday morning.
The 32-year-old, from Penicuik, battled the odds and survived kidney disease that doctors feared would kill him before adulthood.
“I have been given my life back. It is a magical thing – it’s the gift of life,” he said.
“It’s the simple things in life like not having to do a strenuous and vigorous treatment. Whether it be going and playing with nieces and nephews in the park or going for dinner with friends on a night you would be on dialysis.
“To think that someone who’s dying and their family are grieving knowing they are going to lose their loved one, for them to turn around in their time of sorrow and hurt, is incredible. To me there is no greater gift than to save someone’s life.”
Restricted quality of life
HOW long someone can survive on the gruelling dialysis treatment varies significantly from person to person with a transplant the ultimate goal. Even then, it’s not a cure.
Sandra Currie, chief executive of Kidney Research UK, said: “The situation is presenting a real challenge – transplant waiting lists continue to increase because there are not enough organs available.
“Many patients who could benefit from a kidney transplant have to stay on dialysis, which can, in many cases, restrict quality of life. We are funding the best research to make kidney transplants work better and last longer. In time, we will be able to reduce the amount of people who are waiting for a kidney.”
Join the Donor Register at www.kidneyresearchuk.org/jointheregister