IT’S a devastating disease that has blighted their family. Three members of the Jolliffe family are living with an incurable kidney condition – and all of them have had transplants.
And it was the same genetic illness that claimed the lives of their father and grandfather – aged only in their mid 50s.
The curse has spanned three generations of the same family yet for Bob Jolliffe, his sister Lindsay Topp and their relatives, coping with the effects of Polycystic Kidney Disease (PKD) is a way of life.
Grandad-of-one Bob, said: “Our forebears died slowly of polycystic kidney disease. When you grow up aware of that, you learn to savour life more but you have to get on with life.
“It soon becomes a growing realisation that the disease ripples through an entire family. There are relatives affected we don’t know about.
“My brother had a transplant 20 years ago. He was quite young and is as fit as a flea. Lindsay had a successful implant in 2004 and I had mine three years ago.
“We are the lucky ones.”
PKD, which affects between one in 400 people and one in 1000 people worldwide causes multiple cysts to develop on the kidneys.
Symptoms which include high blood pressure, abdominal pain and blood in the urine, do not normally begin until adulthood when the disease is already advanced.
Over time the cysts can increase and progressive damage results in organ failure in almost all patients.
At this point dialysis treatment that involves machines that replicate many of the kidney’s functions- or a kidney transplant are needed or the patient will die.
Bob and Lindsay’s grandfather Edgar Jolliffe, a farmer and a builder, died a protracted death from the disease in the 1960s. But it wasn’t until their father Hugh had an accident at work and was hospitalised in the 1980s that his severe kidney disease was discovered by chance - and his children were all taken to Lymington hospital to be tested.
Lindsay, said: “When I was tested I was only 18 and it was always in the back of my mind. I’d seen how ill dad got. For a man of his age he looked so old and it’s hard to get the thought out of your head that this could happen to me one day. But you are young so you have to live your life.”
Mr Jolliffe underwent an unsuccessful transplant and was a guinea pig for pioneering home dialysis which involved rigging himself up to a drip stand four times a day. He died after contracting septicaemia. While the siblings’ older brother received a kidney transplant 20 years ago, Bob, 60, and Lindsay, 57, were forced to endure long stints of dialysis.
Lindsay, who has worked as a cook at a New Forest private school for 18 years, recalls spending three hours, three times a week at a dialysis unit in Totton for 15 months.
She said: “As your kidneys fail you become very tired, you feel cold, you fall asleep at the drop of a hat, you’ve got no energy.
“Your body is basically slowly running down.”
Bob had to endure ten hours of dialysis while he slept for seven nights a week for two and a half years. The siblings’ faces brighten as they recall the exact moments in the middle of the night when they each received calls from the dedicated transplant team at the Wessex Renal & Transplant Unit at Queen Alexandra Hospital in Cosham.
It was the news they dreamed of that they had a kidney match. But tears soon fill their eyes as they recall the reality of having a transplant.
For both it was strangers who saves their lives after they died.
Bob, a former journalist, who put on six stone on dialysis and who used to struggle to stay awake and was hardly able to walk, said: “You almost give up on it because I was on dialysis for more than two years and it seemed to be forever, to be honest the dialysis was getting more and more painful as time went on.
“The first day or so after my transplant I remember phoning up everyone shouting about the fact I had this operation but then there was the sudden realisation that someone who had given me this had died, and I got very emotional about it. For weeks I burst into tears for no apparent reason.”
They both agree that the transplant is never an overnight fix and have both suffered health problems and still must take anti-rejection drugs everyday. But they are now both determined to live life to the full. Bob, a keen cyclist since his teens, said his life has transformed so dramatically he will compete in the World Transplant Games in South Africa in July to promote the life-changing and life-saving benefits of organ donation.
Now fighting fit and regularly riding his bike for up to 70 miles at a time, Bob said: “It has given me back my sport and I just feel so much better. I don’t think you realise as your kidney deteriorates how bad you’re feeling. To be well again is just amazing.
“My energy has returned to undreamed of levels. The transplant has given me my youth back. Those missing years have been given back to me and I have taken every opportunity to relive them.”
Meanwhile mum-of-two Lindsay, a mum-of-two said she is busy preparing an allotment and is proud of her brother’s achievements.
She added: “An organ transplant is the ultimate gift. No amount of money can buy it and Bob is proving what a difference donors can make to people’s lives.”
To support Bob go to justgiving.com/Robert-jolliffe1 To join the organ donor register log onto organdonation.nhs.uk. The contents of a special letter continues to overwhelm Bob Jolliffe.
THE MOVING LETTER WHICH BOB TREASURES
Its author is the grieving widow of a man who died suddenly from a heart attack. And it was the selfless actions of his wife and family who, by donating his organs, gave Bob his new lease of life on August 25, 2009.
The letter reads: “As a family it has been a great comfort to know that something positive has come out of our tragedy.
“He would have been so happy to know that he had helped others regain their quality of life."
They will remain strangers but Bob will be eternally grateful to the family.
Bob, who lives in the New Forest with his partner Elena, said his daughter Philippa even offered to donate her kidney to her father but the stranger’s generosity meant she did not have to undergo tests or have the operation.
He said: “I have a lot to be thankful for.
“If it were not for the generosity of a family at a time of immense grief, I could still be on dialysis, struggling to stay awake during the day, hardly able to walk on the level let alone up hills, and causing concern to my partner Elena and our families.
“I still get incredibly emotional now.
"Transplants transform lives and my family is proof of that.”