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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on July 22, 2007, 05:44:50 PM
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Donors saved my children
Jul 22 2007
In the week England’s Chief Medical Officer said the only way to combat the UK’s transplant crisis is to treat everyone as organ donors unless they opt out, CATHERINE EVANS spoke to one Welsh family who have had four donor ops between them...
by Catherine Evans, Wales On Sunday
TO SEE your child’s life hanging in the balance is every mother’s nightmare.
But for Helena Jones, that horror was multiplied when four of her five children needed life-saving transplants to save them from a deadly kidney disease.
But there was worse to come – the Glynneath mum discovered she had unwittingly passed the genetic condition on to her five children.
Only her youngest, Cathryn, 33, has not become poorly, despite having the illness.
Helena’s other four children – Robert, Wayne, Helen and Richard – were all diagnosed with glomerular sclerosis in the same year. Robert, now 45, was first to suffer from the effects of the illness, which attacks the kidneys, when he was 28.
Robert said: “I was taken ill with high blood pressure and went to hospital and found out I had kidney disease. They put me on drugs to control the blood pressure and a renal diet, low in salt and potassium. Eventually, my kidneys failed.
“At only 32, I had to go on dialysis for six months and was told I needed a transplant.”
Desperate to save her eldest son, Helena offered to give him one of her kidneys, believing them to be healthy.
But she was devastated when tests revealed she was a genetic carrier of the condition and could not be a donor.
“I was given a test and told I was compatible. Then they came to tell me that I had what Robert had. I felt gutted that I couldn’t help him, absolutely gutted. Robert looked so ill,” she recalled.
But that same weekend, Helena’s prayers were answered and a donor was found.
“We were told on the Friday that I couldn’t give him one of my kidneys. Then on the Sunday, he was told he could have a transplant – they had found a match. We were all crying, it was absolutely brilliant,” she said
Sadly, this was not to be the happy ending the family had hoped for.
After being tested for the condition, Wayne, Richard and Helen found they all shared the same condition as their brother.
“I can’t explain what that felt like – finding out they were all ill was a nightmare,” said Helena, now 74.
“I just tried to stay strong and did what I could for them. But I couldn’t help them to get their health back. No doctor could do anything, only donors could save them.”
Thanks to four generous donors, including a 75-year-old man from Barcelona, Helena’s children have all received transplants and the family’s 16-year ordeal is at an end. Tests on her two grandchildren, Jessica, 21, and Morgan, 13, have shown they do not have the condition.
“How do you say thank you to the donor families?” said Helena, who supports Kidney Wales through her own charity, Helena’s Hope, which raises awareness of the national need for donors.
Her words are even more meaningful after England’s Chief Medical Officer this week called for organ donation to be run on an opt-out basis, rather than the current opt-in method whereby people elect to donate their organs when they die.
Sir Liam Donaldson said turning the system on its head would meet the demand for organs, which is treble the actual number of available body parts.
“Thank you isn’t adequate. I would like to know the donor families – I would get on my hands and knees to thank them.
“I started the charity because it was either sit in a corner and cry or get out there and do something. I did an abseil for the charity when I was 69 and a skydive when I was 70!
“It’s brilliant that all four of my children have had their lives back. I’ll never forget the four calls for each of them, saying they could have transplants. Robert had his transplant in 1995. Wayne, Helen and Richard had their transplants three years apart – Wayne’s was in 2001, Richard’s in 2003 and Helen’s in 2006. It meant all the money in the world to me – health is wealth.
“In some ways I’m glad I couldn’t give one of my kidneys – I would have given to one of my children but not the other three who were ill. That would have been awful.
“I just wish more people would sign up to be a donor. If you were asked by a friend for help you would help them but donors don’t even know who they are helping. They do it through no gain to themselves. They are prepared to give the gift of life to a complete stranger.”
Helena’s family say they are eternally grateful to the donors and their families. But they have mixed emotions about the life-saving transplant operation because while they were celebrating, another family was grieving.
Richard, who received his new kidney on Christmas Day 2003, said: “Emotionally, it’s like winning the lottery a million times over. But at the same time you know someone has died as well. I was really sad for the person who had died and donated their kidney.
“They’re always with you, every second of the day. I’ve got the utmost respect for them really. My mother and father have given me life, but this person has also given me life in a way.”
Wayne explained how overwhelmed he was by his donor’s family.
“The others wrote anonymous letters to the donor families to thank them. But I just couldn’t handle it to be honest. But I’m so grateful,” he said.
“Having a transplant is life-changing. You’re ill one day and well the next. You’ve got to take a couple of tablets in the morning and the evening, which is no problem at all.”
Robert added: “It’s hard to explain when you’ve had your life back. It makes you appreciate life really.
“These people who donate their organs are heroes.”
Now both fighting fit, Richard, 41 and Helen, 39, will be taking part in next month’s Transplant Games, held in Edinburgh.
“It’s a great way to say thank you,” said Helen.
More than 8,000 people in Wales suffer from kidney disease, which can affect people from all walks of life. But there is a huge shortage of donors.
Kidney Wales raises money to fund basic and clinical research and renal facilities for patients with kidney disease.
For more information on becoming a donor, contact your local GP Kidney Wales on 029 20 343 940 or log on to www.kidneywales.com
http://icwales.icnetwork.co.uk/0100news/features/tm_headline=donors-saved-my-children&method=full&objectid=19491549&siteid=50082-name_page.html