For Stephen Lott, chronic kidney disease first manifested itself in the summer of ’88.

“I was 16 and feeling quite unwell with fatigue and swollen ankles,” he says. “I was referred to St Vincent’s University Hospital where I was diagnosed with membranous nephropathy.”

Membranous nephropathy occurs when the small blood vessels in the kidney that filter waste from the blood become inflamed and thickened.

For the next three years, Stephen was in and out of hospital where various medication levels were tried.

“Nothing worked, so in December 1991 that kidney failed,” he says. “I then had to drive up and down to Beaumont from college in Multyfarnham for dialysis three times a week for four hours. It was tough going but my health wasn’t too bad at that stage. Six months later, in May 1992, I got my first kidney transplant.”

Thankfully, that transplant went well for six years, during which time Stephen qualified in farm management, got married and built a house.

First transplanted 1992

Kidney failed in 1998

“Life was good but in late 1997 there were signs of deterioration from the (transplanted) kidney so they upped the drug levels. Unfortunately, that kidney failed in 1998 so I was back on dialysis in hospital.”

Stephen admits that it was difficult to accept.

“It was hard to take because it was the first failure. After that it didn’t matter so much because you got used to it.”

The weekly routine, while he managed a farm in Kildare, was to go straight from work to Beaumont and not be home until midnight, three times a week.

“In that dialysis, the rate of flow that it takes the blood out of your system goes at 400ml per minute and it really zaps your energy. You feel like you’re after doing two days’ work. It was heavy going all right, but I’d be fairly determined generally. I always said I’d never let dialysis or kidney failure get the better of me.”

Second transplant

In December 1999 Stephen got the call for a second transplant but complications were to follow.

“I was in ICU for two days on a ventilator and the family were called in. My wife, Caitriona, was told at one stage that if I didn’t start breathing on my own I would have about six hours to live. I pulled through thanks to a great team in Beaumont.”

However, complications ensued again.

“I spent a lot of time in hospital that year with high blood pressure and even heart failure and after 12 months that kidney was showing signs of deterioration too.”

Sister donated kidney

Stephen received another donor kidney in February 2006 – this time from his sister Noeleen.

“It all went well for a while, which was great, and Andrew, our son – a miracle child – was born in December 2007. However, yet again, the transplanted kidney began to show signs of deterioration a year later and by Christmas 2009 I was back on dialysis.”

Stephen says that you get used to the knockbacks and have to stay positive in the face of it.

“I look at life in terms of a scales. On one side you stack all the crap that’s happening in your life and on the other you stack all the good things and 99% of the time the good will outweigh the crap. You have to go with that attitude in life, especially when you have problems.”

Stephen opted for home haemo-dialysis as soon as it was offered to him.

“I started a four-week training programme in Beaumont in February 2010 on how to use the machine. At this stage, I’d been around dialysis machines for 20 years so I found it all straight forward enough.”

A dialysis machine was set up in his spare room before he went home and a nurse oversaw the procedure for the first week.

Health improves with home dialysis

Stephen’s health improved significantly after that, he says.

“That was because I was getting more dialysis – now 16 hours instead of 12 – and I wasn’t driving up and down to the hospital. It meant I could spend quality time with Andrew as well, who was only two at the time.”

Stephen switched to nocturnal home haemodialysis in April 2010 and, over five years on, is singing its praises.

“This is the crème de la crème of dialysis,” he says. “Every second night I start preparing the machine at 9.30pm and I’m connected on to the machine at 10.20pm. I stay on for a full eight hours overnight and disconnect it at 6.20am. The key thing is that I’m getting eight hours of dialysis every alternate night which is a lot of dialysis, but the pump is only running at 250ml per minute so your heart is not under as much pressure. My standard of health has improved dramatically from the home dialysis.”

While Stephen found it very difficult to sleep for the first few months of being on this type of dialysis, it has made a huge difference.

My gift of life

“People talk about having a kidney transplant as being the gift of life and, apart from the first, for me, unfortunately, the transplants didn’t really work out that well, so I would say at this stage that home haemodialysis is my gift of life.

“I’m five and a half years on this type now and I haven’t been hospitalised once. I’m on no blood pressure medication now either and I only go to my GP once a year to get the flu vaccine.”

Stephen says he dreaded going up and down to hospital for dialysis.

“It was mind blowing. You’d try to sleep but time just crawled. There’s evenings you’d resent going on the machine at home even still, but it’s part of your life and you get on and do it. It’s no big deal. I’m content to do it. The problem with me is that the disease I have attacks the transplanted kidney, so that could happen again (if he received another transplant).”

The downside is that your master bedroom turns into a hospital ward, he says.

“It’s a family thing and you need great support from the family unit. It also wouldn’t be possible without that support and that of the medical team in Beaumont.”

Positive experience

Stephen now simply attends Beaumont hospital every two months for blood tests.

“You hear so much about what’s wrong in the health service but it’s important, when things are going right, to highlight a good service.

“Some dialysis patients feel that they don’t want to bring it (the dialysis) into the home or they feel that they wouldn’t be able to manage it, but you have to go for it. After a while it comes naturally. You’re just pressing buttons to set it up without even thinking about it. My standard of health is second to none and research has shown that longevity is greater on home dialysis too.”

More information

www.ika.ie

www.baxterhealthcare.ie

www.beaumont.ie

Health bytes

Worrying scren time usage

Among young children

A new survey, conducted by Early Childhood Ireland, asked 332 parents across the country about their children’s screen time and technology use. A number of worrying trends were highlighted by the results of the survey.

Because of its concern, Early Childhood Ireland has issued practical tips for parents for managing screen time.

Survey results

  • • 66% of parents believe it is OK for a young child to use technology freely.
  • • 20% feel that smartphones make parenting easier.
  • • 75% believe that technology has educational and other benefits for young children.
  • • 72% believe that the purpose of their child watching TV is relaxation.
  • • 48% of parents notice a negative change in their child’s behaviour after using technology, describing that behaviour as angry, moody, tired, zoned out and challenging.
  • • 85% of children under two years of age have been exposed to TV or DVDs.
  • • 57% of parents have never received advice on the amount of time a young child should spend engaged in screen based activities.

    • “The findings show a real disconnect between the guidelines and the reality of screen usage in homes in Ireland,” says a spokesperson. “We recommend that parents should have clear parameters around screen time for young children, especially at bedtime.”

    While using technology sensibly has been shown to be effective in terms of engaging and empowering children over the age of three, this is when screen time is monitored and quality content is viewed.

    Advice

  • • We suggest that parents follow US recommendations advising that children under two years of age should not be in front of a screen at all.
  • • Try not to rely on screens too much to keep children amused.
  • • Ideally, children aged two to five should have no more than an hour a day.
  • • Avoid inappropriate content by monitoring your children’s screen diet.
  • • Establish screen-free zones in the home, have none in bedrooms and turn off TV during dinner.
  • • Set a good example. Restrict your own screen time so that you’ve time to read stories to your child and talk about their day

    • See www.earlychildhoodireland.ie/childrens-use-of-technology