Monday September 03 2007
At 28, life was good for Triona Sheehan. Living happily with her husband Harry in Greystones, Co Wicklow, Triona loved her job in IT. She had a son of seven whom she adored, and to crown her joy she was pregnant with her second child.
Then, while eight months pregnant, Triona developed complications. "I had protein in my urine, and oedema -- fluid -- in my legs too," she says. "I was taken into hospital, and, realising I had a kidney malfunction, they brought in a specialist from St Vincent's.
"I was getting progressively worse each day. They decided to take the baby out early to stop the regression, but it didn't work. The condition kept progressing, and when Holly was six weeks old, I was put onto dialysis."
Dialysis is a process that removes the waste products from the body by passing the patient's blood through a filtering machine that mimics the kidneys.
Triona performed peritoneal dialysis, at night, at home. Fluids were passed through her abdomen, in a tube, into the abdominal cavity to remove wastes from the blood, and she would connect it up each night.How did she cope? "It was a shock," she says. "But the first year was easier than the second. I could actually function normally. I was doing the dialysis at night -- my husband, Harry was the one getting up to do the night feeds -- and I was going into the clinic every eight weeks. I thought, "this isn't too bad for a critical illness.'
"Since then, though, I have been sick a few times. I've had peritonitis three times; that's like having a burst appendix.
"You get progressively worse on dialysis," she explains. "In the second year I became lethargic. I've got the onset of osteoporosis; I've got muscle atrophy, and my heart is under pressure. I've become anaemic too. I'm getting to the stage where I can't manage everyday life.
"It's hard coping with one income and I'm not used to being stuck at home. I can't get the children up every morning, and I can't clean the house. Luckily, I have a supportive family," she says. "Harry is amazing, and one of my sisters comes in and helps me." And the children -- who are now nine and two -- suffer as well.
"Karl started acting up a year ago when he realised I can't do what I could before. It's difficult for him. He knows exactly what is going on, and has heard my family talking about it. He understands. He turned round one day and said, 'mummy, you can have my kidney'."
"Holly understands, too. She comes and sits on my bed all day when I am sick. It's tough on them and everyone, but I have to make the most of the situation." Triona has been on the transplant list for two years now. "We're hanging on just hoping," she says."I am a stronger person than I was," she says. "And I'm less naïve. It has made us closer as a family. We know, now, that bad things can happen. We take life day by day."
Last year, 234 people in Ireland had an organ transplant, and it was all thanks to the generosity of 91 deceased donors and their families. That makes it a record year, but there are still 600 people waiting for a transplant.
Presumed consent
In England, they have been debating the laws around the issue of organ donation.
The Government Chief Medical Officer, Sir Liam Donaldson, suggested that everyone's organs should be available for transplant after death, unless they state otherwise -- in effect presumed consent.
Mark Murphy, CEO of the Irish Kidney Association, is not in favour of presumed consent. "In Ireland we have informed consent, and I strongly believe that is the best way," he says.
And it's not enough for people to carry a donor card. They have to tell their families because, in the case of death, it is the next of kin who gives permission for the organs to be donated.
"Most people are willing to donate and the family are not aware of it," he says.
"We don't talk about death within the family; it is not the Irish way. But if more people let others know how they feel, relatives won't be trying to second guess it when their loved one dies."
The problem, Murphy says, is the timing. "In that moment when someone is dead, but a machine is making their blood go round, it is hard to realise that they are dead. And that dreadful moment is the only time we have, to ask about donation.
"There are countries in the EU who have presumed consent, but they don't use the law. The next of kin is still allowed to say no.
"Spain has the law, and say it didn't make a difference in the refusal rate; but there, they ask a great deal more people if they are willing to donate.
"Every intensive care unit in Spain has a donor co-ordinator. They will stay with the families as long as they are needed."
Meanwhile, Mark is busy raising awareness. He is in Thailand with the 23-strong Irish team for the 16th World Transplant Games.
While there, his pitch to hold the 2010 European Transplant Games in Dublin was sucessful
At least 21 countries will take part in the games from all the way across Europe.
Over 450 athletes will come to Dublin and demonstrate how fit they are with new kidneys, livers and hearts.
Double transplant
However, only one of them has received a double transplant. Bridie Nicholson from Sligo received a new kidney and a new pancreas in 2000.
"I'd had diabetes since I was a child. I was insulin dependent," says Bridie, who is in her early 40s. "And as I grew up, I got complications.
"For the first six months I used a machine at home. I'd get back from work, go for my walk, and go on the machine for 10 hours. But then I got sick and had to go into the hospital system."
There Bridie had haemo-dialysis -- which involved running her blood through an artificial kidney machine. Then, late one Tuesday night, the call came. A kidney and pancreas were available at Beaumont Hospital.
"I was so excited, I thought I would never get to theatre quickly enough" says Bridie.
The operation went well, although afterwards Bridie had a setback. she developed a clot and ended up in intensive care.
"But I got over that, and every day I felt a bit better," she says, praising all the nurses and staff who looked after her so well.
Seven years on, Bridie is fighting fit.
"Walking out of hospital on a cold winter's evening knowing I had survived a double transplant -- and no longer had diabetes -- nothing replaces that feeling," she says.
"I am so grateful to the family who donated. They've given me my life back."
For further information, visit www.ika.ie or www.rip.ie
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