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Home Dialysis supporting Stephen to receive his treatment at home

Patient Story

Stephen has always had a positive attitude towards life and has been lucky enough to keep that with him. When he was first diagnosed with kidney disease in 1988, almost 30 years ago, he was understandably shocked and it took a while to get his head around it.

I have a kidney disease called membranous nephropathy which affects the part of my kidney that filters fluids and waste. For three years I was in and out of hospital getting different tests and trying different treatments while my doctors tried to slow down the rate of deterioration of my kidneys. But nothing worked and gradually the function of my kidney deteriorated and in 1991, it failed completely.

He was put on the kidney transplant list and started dialysis immediately. He was 19 at the time and studying agriculture so he bought a car and travelled up to Dublin every Monday, Wednesday and Fridays for four hours of dialysis each night in hospital.

In May 1992, he got the call to say they had a kidney for him. He drove up during the night and was transplanted the next morning. Stephen woke up after his surgery and he said it was absolutely wonderful.  There were no complications and Stephen's new kidney worked well for about four or five years.

You realise how lucky you are as when you’re in and out of hospitals you see a lot of different people and different cases going through a difficult time. Sometimes transplants don’t work, but hope is always there. Life was good for those years; I met my wife, got married and we were building a house so it was a good time for us all.

In 1997 Stephen’s kidney started to fail. The kidney disease was lying dormant but it came back and started attacking his new kidney. He was put back on dialysis and onto the transplant list. Around Christmas of 1999, he received a call for the new transplant but unfortunately this time it didn’t go so well. Stephen had fluid on his lungs and ended up in ICU. Thanks to the dedicated staff at the hospital he got through it and eight weeks later he was out of hospital and starting a new job. The kidney worked well for a short while but just 12 months later he knew it was going to fail, again due to his disease.

“You need a very positive attitude to deal with these things, and you do get resilient, I treat life like a pendulum scales. You put all the bad stuff on one side, then the positives on the other side, and you will find the positive almost always outweighs the negative. If you get bogged down by the negatives and the ‘why me’ it’s a slow road to nowhere.”

Following on from a third failed transplant, in September 2009 he was back to hospital dialysis and he heard rumours of dialysis at home. “I was very interested so when a programme was launched in February 2010 I went into hospital for four weeks training – after 20 years hanging around hospitals and dialysis I was pretty sure I could do it.” Stephen said. The equipment was set up in his house and a nurse visited every second day for a week, just to make sure he knew what he was doing.

Initially I was on four hours of dialysis every second night, it was marvellous not having to travel to the hospital. At that time my son was only two so it meant I could see more of him and we’d sit and watch cartoons while I did my dialysis.

After 18 months Stephen went onto a nocturnal dialysis regime. Every second night he undertakes eight hours of dialysis while sleeping which means it frees up even more of his spare time. “I’m at a point now where I’m as good as I’ve ever been and feel better on a nocturnal regime than when I had the transplants - my standard of health is higher than ever. When I had the various transplants I was on heavy medication for high blood pressure but since going on nocturnal dialysis I’ve had no high blood pressure at all.”

Stephen added: “These days I can do whatever I want in the evenings, which is great. My son is nine, so we go to football and do all the normal things families do each day. I head up to bed, take about 40 minutes to hook up the machine, and do my dialysis during the night. My prognosis is good, my blood pressure is back to normal, I’m on vitamins rather than medication and I haven’t been hospitalised in seven years. This is my life. I don’t waste my time thinking ‘why me’, I just get on with it. I know everyone has a different way of dealing with these things but I hope my story can show people that there are options for people living with kidney disease.