'I never thought that kidney failure would happen to me'
Edel Coffey talks to the people whose lives have been changed by organ donation
Published 25/03/2014 | 02:30
The idea of donating an organ is something that rarely crosses most of our minds, until we need one, that is.
Lorraine Armstrong (27) from Ballygalway, Sligo, felt ill on her honeymoon but didn't think much of it at the time. The young newlywed put her headaches down to all the excitement in the build-up.
When she was due to go back to work, her vision wasn't right, it was blurry but she put off doing anything about it. She made an appointment with the opticians for the end of the week and they couldn't find anything wrong.
"My mum said go to hospital but I said I'd be fine. I had a bad headache but I put it down to travelling. I had an excuse for everything."
By Saturday, things were so bad that Lorraine couldn't deny something was very wrong. "I woke up and knew instantly I had to go. I had a really bad headache. I felt like my head was going to explode. My vision was totally blurred, I was sick, and dizzy, with no energy at all and felt just rotten."
Lorraine Armstrong on her wedding day just days before she got sick
Lorraine was seen straight away in the hospital. Her blood pressure was 200 over 127. The nurses didn't understand how she had not had a stroke or a brain haemorrhage. She was treated for her blood pressure first, and then, when that was under control, they started to investigate. Lorraine's family were panicking but she was calm. The doctors ran tests and her kidney function came back as at 11pc. A normal healthy kidney averages at 100pc kidney function.
"That's end-stage kidney failure," says Lorraine. "There's no coming back. The way they put it was, 'Lorraine, your kidneys aren't functioning at the minute'."
There are two types of kidney failure – chronic failure and acute. There is no cure for chronic. When they did a biopsy, they found that Lorraine had chronic kidney failure. "I was fairly calm. I didn't realise for a long time. Last year I realised I'm going to do dialysis."
Lorraine never had any symptoms. The only thing that changed on her honeymoon was her ankles were swollen and she had a bad cough, which would suggest fluid on the lungs. "Every time I got up from a chair or the bed my head would pound, which was the blood pressure."
The diagnosis of chronic kidney failure meant Lorraine needs dialysis and a kidney transplant. "Even now I find it hard to think, it's a bit unbelievable. The treatment has helped. My symptoms have reduced. I've more energy and I feel better. I do eight hours' dialysis every night so you're a bit tied."
It has affected her life. She says she doesn't have the same lifestyle as an average 27-year-old. "I'm not out till 6am! I try to keep living in normality. I work with children with autism; some weeks the part-time hours are a struggle. I love to do it and I feel better in myself." She's also going on holidays in a few months, her first with the dialysis machine.
She's on the transplant list since December and says the average wait is about three years, but you might get lucky, or unlucky.
"Before I never thought I'd need an organ so I didn't think too much about it but I would ask everyone to get an organ donor card and sign it and talk with your family so if anything did happen they would know that you want your organs donated."
For people in the same situation as her, she says, 'keep going, you'll get there'.
Norman Fair. Photo:Keith Heneghan
Norman Fair (43) from Mayo, received a liver transplant seven years ago and has since married his long-term partner, Stephen. Norman was diagnosed with ulcerative colitis when he was nine and had a total colectomy and ileostomy in 1997, followed by ileostomy reversal six months later and a diagnosis of PSC in 2004. Primary sclerosing cholangitis (PSC) causes inflammation and blockage of the bile duct and can ultimately lead to liver failure. In 2006, when he was 35, Norman had an urgent liver transplant.
"In December 2005, I woke one morning and Stephen said, 'your eyes are very yellow'. The doctor sent me straight to A&E. They were thinking it was hepatitis or something. They did liver blood tests, which weren't great but weren't too bad, and improved while I was in hospital. I came out just before Christmas and had a lingering flu but I was fine again."
By June, he started getting itchy red sores on his legs that he thought were hives but were actually a sign of liver in distress. "I kept putting off going into hospital. When I went in to get iron, they kept me in." Norman fully expected to be home within a week, but after about 10 days he lost consciousness overnight.
"They transferred me to intensive care and put me in an induced coma because my tests weren't good. I was heading towards the fourth stage of liver failure. I went to the top of the Irish list, and was third on the UK list. They gave me five days to live." Four days later the organ came in. It's a sign of our times that when Norman came around after his operation the first word he spelled out with his eyelids was 'M-O-R-T-G-A-G-E', to check had his partner paid the mortgage.
When Norman realised he had had a transplant he was upset at the accompanying knowledge – someone else had died. "I got very upset. A couple of days later I couldn't stop crying. The gratitude for the donor is hard to express because I know that I'm here because of them. I have eight years of extra life, as I call it. I know the date of my transplant and every year I put something up on Facebook and all my friends 'like' it. It sounds silly but that day is my new birthday and I'm very aware that that day is a very painful day for somebody else. Through that process I'm advocating organ donation. I haven't taken this organ and forgotten where it comes from. You look on it as an extension of your life."
In 2012, he and Stephen had a civil partnership. "I think the whole process of the transplant frightened us. Also, if anything happens the legal issues were there so it ties those up."
Norman is advocating awareness around the importance of organ donor cards. "The more awareness there is, the more people think about it. Requests go up during organ donor awareness week. It's a second chance at life."
Dad-of-four David Anderson. Photo Declan Doherty
Just over 20 years ago, Donegal father of four David Anderson had an asthma attack and says his lungs had been deteriorating ever since. He went to the local hospital about six years ago and was referred to a consultant, who upon listening to his lungs told him he was a candidate for a lung transplant.
"I was on home oxygen 16 hours a day. It's a wild change to your life. If you want to go anywhere you have to prepare and get oxygen. They put me on a new medication and after about 10 days I couldn't even climb two steps."
David went back to the hospital and was kept in. "I was told I had between two and three years without a transplant." He had no quality of life and couldn't play with his children. He was put on the list straight away.
The wait can be long. "I had 10 calls. Sometimes you couldn't use them or someone else might have needed it more." The disappointment could be tough. David said he would always make sure to get out with people the day after getting a call that didn't work out to stop thinking too much about it.
He had a double lung transplant in November and is already walking four miles a day. "It takes about a year to get over the operation. The muscles in your legs are so weak and your whole system is let down because you weren't fit. I can run up the stairs now. It's a big change, I couldn't go outside in frost before."
For anyone thinking about donating, he says, it's important to let your family know your intentions. "I would like to thank the family for donating. It's very hard but if they talked over with the family ... it is a great gift. One person can save up to six or seven lives. It's very sad because someone is losing their life. We never thought about it till it happened. It changes everything if you know somebody."
For new mum Emma O'Sullivan, from Durrow, Co Laois, she has always known about her need for a transplant. "I had kidney reflux since birth. I had three or four operations trying to fix the reflux, but they were unsuccessful."
Emma spent her first nine years on medication for renal failure and led a relatively normal life. Her father donated a kidney, which she had for 11 and a half years. "We were always told it was not forever, it was an opportunity."
When the kidney failed, Emma went on the organ donor list and was on dialysis for 18 months. After that time she got a call to go straight to the hospital from work and discovered they had a match for her. Since then, she hasn't looked back. "I took part in the world transplant games, doing the 100m sprint, 200m sprint and shot-put."
She's also recently given birth. "I thought I wouldn't be able to have a child because of my medical history. We tried for a few years, and then went and got help from the HARI unit." Her son is now three months old.
"The donor families are so brave to give the organs to people that need them. I wouldn't be where I am if it wasn't for them."
Organ Donor Awareness Week campaign is organised by the Irish Kidney Association and will take place from March 29 until April 5. This year marks the 50th anniversary of organ transplantation in Ireland. www.ika.ie or lo-call 1890-543639.
Health & Living