THE survival of many transplant patients often depends on heartbroken families making a difficult decision about organ donations during their hours of grief.

The Evening Press yesterday highlighted the moving story of how one York organ donor, 38-year-old Louise Johnson, improved the quality of life for 25 people following her death.

Today, a mother from York spoke openly about feeling "blessed" at receiving someone else's kidney, as we urged others to sign on to the NHS Organ Donor Register.

Regional transplant co-ordinator Julie Jeffrey stressed the importance of joining the register, but said it was also vital for families to discuss the issue of organ donation.

"Even if we know someone is on the register, we still need permission from next of kin. A transplant wouldn't happen, even if someone had wanted it, if it goes against their family's wishes."

Because organs have to be transplanted very soon after someone's death, they can only be donated by someone who has died in hospital. Usually organs come from people certified dead while on a ventilator in intensive care following a major accident, stroke or brain haemorrhage.

Julie said: "Not only are people coming to terms with the sudden death of a loved one, they are having to make big decisions. But for those who have discussed organ donation, it is not a big decision at the time of someone dying because they know that's what the person wanted."

The refusal rate in Yorkshire is 47 per cent - one of the highest in the country.

"Most of the time it is because families don't know what the family member wanted," said Julie.

Between April 2003 and March 2004, 74 patients in Yorkshire were diagnosed as brain stem dead - 30 went on to become organ donors.

"There are thousands of people waiting for heart, lung and liver transplants. For them, there are no alternatives, unlike people waiting for kidneys who can go on dialysis. We are desperate for heart and lung donors."

Nationally, more than 6,000 people need an organ transplant. Most need a kidney - in Yorkshire, 402 adults and 12 children are waiting for kidneys, while 24 people are on the list for liver transplants. Fewer than 3,000 transplants are carried out each year, and nearly 400 people died last year waiting for a new organ. To sign on to the NHS Organ Donor Register phone 0845 60 60 400 or log on to www.blood.co.uk or www.uktransplant.org.uk

To join the bone marrow registrar phone 0901 8822234 or long on to www.anthonynolan.org.uk

JULES Hunter said simply: "I feel incredibly blessed."

Within a week of joining the waiting list for a kidney transplant, a match was found.

Following a successful operation, life slowly returned to normal.

The York mother-of-one is now full of energy, and back at work as an occupational therapist for City of York Council.

But the 45-year-old is well aware that the story of her short wait is very rare.

Jules was diagnosed with kidney failure in April 1986. She underwent regular tests and her condition was closely monitored during clinic visits.

"It wasn't until September 2000 that I finally had to start on dialysis. I had managed for longer than they predicted, but by then I wasn't feeling well. I was struggling.

"I started on APD - automated peritoneal dialysis. That involved a machine at home that was attached to a tube in my tummy, working overnight to take all the toxins out of my blood stream.

"APD gave me quite a lot of freedom during the day. I could go to work, have a normal day and get back on to the machine at night."

Jules, who is chairwoman of the York Kidney Patient Association, recalled: "When I was put on the list, I had my transplant a week later in May 2001 at St James's Hospital, in Leeds. People usually wait years and years. My case was very unusual. Something happened to somebody who happened to be a match. It is not like waiting for an operation when you know that when you reach the top of the list you get the operation.

"With a transplant you have to wait for a match. If you put any organ in that won't match, the body will reject it so violently that person will be very ill."

Jules stayed at St James's Hospital for a week and was off work for three months.

"I am in my mid-40s and don't have any other problems like associated diabetes. I am fortunate. I have lots of energy although I am on an awful lot of pills. When I go for my medication it is like getting a carrier bag of drugs. You take the drugs for the rest of your life. I take about 15 a day.

"I feel incredibly blessed, kind of chosen in a way. I still feel incredibly privileged to think that someone died and their family made that decision in their hour of bereavement to do that for someone else.

"I know it is a huge decision for people to make. But it really does help so many people. There are a lot of people who are really poorly and a transplant makes such a huge difference."

The York Kidney Patient Association is a registered charity, set up six years ago to provide support for kidney patients as well as transplant patients. For more information, phone association secretary Isobel Goforth on 01904 703375.

Updated: 09:52 Saturday, April 09, 2005