Why am I left with half a life?

by William Telford - Plymouth Herald
1st July 2006

   KIDNEY patient Roy Brown just wants half his life back — that's why he's backing a new law which should increase the number of organ donors.
    The 60-year-old former naval base project control manager has been waiting two years for a new kidney. It means undergoing painful dial¬ysis at Derriford Hospital three times a week.
   Mr Brown, married with two sons, is exhausted after each four-hour bout of treatment. Every other day is lost to being hooked up to a machine. That's why he's welcoming the Hu-man Tissue Act, which comes into force today.
   The law allows, for the first time, living people to donate organs to strangers. A national database will be set up and physical and psychological testing carried out on volunteers. It also prevents families of dead people, who have agreed to be donors, from vetoing their loved-ones' wishes.
   All this has the intention of increasing the number of organs available for doctors to 'harvest' for transplant.
   Mr Brown said: "When you go on a waiting list it could be for six months or six years — it's an absolute lottery. "Hopefully this (act) is going to increase the number of donors available and that's got to improve so many people's lives."
   For Mr Brown, from Hartley, a new kidney would free him from the discomfort, and sometimes pain, of having two huge needles inserted into veins in his arm, during dialysis.
   He suffers from hereditary polycycstic kidney disease, and has already had one kidney removed. His other kidney will need to be taken out too. A transplant brings risks, with anti-rejection drugs leading to an increased cancer danger, but Mr Brown...said: "I'm living on a life-support machine three days a week, which I find very depressing. "I only really have half a life; three days a week are wiped out. "A transplant would give me back my life. I'm looking at it providing a 70 to 80 per cent improvement, and my time would be my own."
   There is a huge gulf between the 8,000 people needing transplants in the UK, each year, and the 3,000 transplant operations annually. About 500 people die every year waiting for a suitable organ. This is despite there being 13.4 million people on the NHS organ donor register. There are always about 100 patients from the South West needing a new kidney. Last year Derriford Hos-pital was able to carry out 51 transplants — about half the waiting list.
   Nationally it is estimated that in 10 per cent of cases, relatives block the removal of organs from registered donors. As a result, hundreds of patients each year are denied transplants that in some cases could save their lives.
   Mr Brown said: "I think both aspects of this act are very important. "I think there will be an increase in the number of younger people becoming donors. Their outlook is different to ours, they are more open-minded." He envisages younger people being encouraged by the legislation to consider donating kidneys, and also other organs such as hearts and corneas. And he welcomes those with a 'commitment to helping others' by becoming live donors.
   "It's a big commitment and a big operation, and people should be recognised for that commitment," he said. "But it's a tremendous thing to give someone the opportunity of a better lifestyle." Mr Brown also understands how families must feel, how painful it must be to discuss donating organs from a recently deceased loved one. But he said a trip to see the 'grey and sunken' people in any dialysis ward would give a different per¬spective.
   "The body goes ashes to ashes," he said. "We need to look at the human issue." He said families should ask 'if that body can help a number of others to survive or have a better lifestyle'.
   Lisa Kernick, from Saltash, underwent an emergency liver transplant four years ago, aged 19. Although she only had to wait four days for surgery she understands the problem with lack of donors. But she also sees controversy in the new law.
   "I see it as a good thing, but we have got to think about the families," she said.
   The Reverend Ben Belsham, pastor of Eggbuckland Community Church, had to counsel the family of a child killed in a road accident. They decided to donate organs, and Mr Belsham said: "They felt he was giving life to others." The pastor said the use of donor cards should be encouraged, and families should discuss the subject in advance. He also said there is a view that the human body is just a shell with¬out the spirit. "It's a good and useful memorial for the person to move life to some¬one else," he said.
   John Evans, chairman of the British Organ Donor Society, said: "The only way of really knowing is if someone is on the national register, so more people need to sign up to it. "This is altering the bias from asking the family to telling them what's going to happen, so it is more towards the donor's wishes."KIDNEY patient Roy Brown just wants half his life back — that's why he's backing a new law which should increase the number of organ donors.
    The 60-year-old former naval base project control manager has been waiting two years for a new kidney. It means undergoing painful dial¬ysis at Derriford Hospital three times a week.
   Mr Brown, married with two sons, is exhausted after each four-hour bout of treatment. Every other day is lost to being hooked up to a machine. That's why he's welcoming the Hu-man Tissue Act, which comes into force today.
   The law allows, for the first time, living people to donate organs to strangers. A national database will be set up and physical and psychological testing carried out on volunteers. It also prevents families of dead people, who have agreed to be donors, from vetoing their loved-ones' wishes.
   All this has the intention of increasing the number of organs available for doctors to 'harvest' for transplant.
   Mr Brown said: "When you go on a waiting list it could be for six months or six years — it's an absolute lottery. "Hopefully this (act) is going to increase the number of donors available and that's got to improve so many people's lives."
   For Mr Brown, from Hartley, a new kidney would free him from the discomfort, and sometimes pain, of having two huge needles inserted into veins in his arm, during dialysis.
   He suffers from hereditary polycycstic kidney disease, and has already had one kidney removed. His other kidney will need to be taken out too. A transplant brings risks, with anti-rejection drugs leading to an increased cancer danger, but Mr Brown...said: "I'm living on a life-support machine three days a week, which I find very depressing. "I only really have half a life; three days a week are wiped out. "A transplant would give me back my life. I'm looking at it providing a 70 to 80 per cent improvement, and my time would be my own."
   There is a huge gulf between the 8,000 people needing transplants in the UK, each year, and the 3,000 transplant operations annually. About 500 people die every year waiting for a suitable organ. This is despite there being 13.4 million people on the NHS organ donor register. There are always about 100 patients from the South West needing a new kidney. Last year Derriford Hos-pital was able to carry out 51 transplants — about half the waiting list.
   Nationally it is estimated that in 10 per cent of cases, relatives block the removal of organs from registered donors. As a result, hundreds of patients each year are denied transplants that in some cases could save their lives.
   Mr Brown said: "I think both aspects of this act are very important. "I think there will be an increase in the number of younger people becoming donors. Their outlook is different to ours, they are more open-minded." He envisages younger people being encouraged by the legislation to consider donating kidneys, and also other organs such as hearts and corneas. And he welcomes those with a 'commitment to helping others' by becoming live donors.
   "It's a big commitment and a big operation, and people should be recognised for that commitment," he said. "But it's a tremendous thing to give someone the opportunity of a better lifestyle." Mr Brown also understands how families must feel, how painful it must be to discuss donating organs from a recently deceased loved one. But he said a trip to see the 'grey and sunken' people in any dialysis ward would give a different per¬spective.
   "The body goes ashes to ashes," he said. "We need to look at the human issue." He said families should ask 'if that body can help a number of others to survive or have a better lifestyle'.
   Lisa Kernick, from Saltash, underwent an emergency liver transplant four years ago, aged 19. Although she only had to wait four days for surgery she understands the problem with lack of donors. But she also sees controversy in the new law.
   "I see it as a good thing, but we have got to think about the families," she said.
   The Reverend Ben Belsham, pastor of Eggbuckland Community Church, had to counsel the family of a child killed in a road accident. They decided to donate organs, and Mr Belsham said: "They felt he was giving life to others." The pastor said the use of donor cards should be encouraged, and families should discuss the subject in advance. He also said there is a view that the human body is just a shell with¬out the spirit. "It's a good and useful memorial for the person to move life to some¬one else," he said.
   John Evans, chairman of the British Organ Donor Society, said: "The only way of really knowing is if someone is on the national register, so more people need to sign up to it. "This is altering the bias from asking the family to telling them what's going to happen, so it is more towards the donor's wishes."