Health: Putting patients back in control
Case study: Stephen Lott has endured serious kidney problems for most of his life, including three unsuccessful transplants, says Joy Orpen, but he has been given a new lease of life after beginning a course of home dialysis
A renal patient, who has endured three failed kidney transplants, is finally thriving -- thanks to a process that allows him to undergo haemodialysis at home.
He says, as a result, the quality of his life has greatly improved.
Stephen Lott, 41, chief livestock supervisor at the UCD Lyons Research Farm in Co Kildare, began to experience health difficulties when he was just 16 years old.
"In 1988, when I got swelling in my ankles, my GP referred me to St Vincent's Hospital in Dublin, where I was diagnosed with membranous nephropathy," he says.
Stephen spent the next three years in and out of hospital.
In December 1991, while he was studying at Multyfarnham Agricultural College, in Co Westmeath, he suffered complete kidney failure and began haemodialysis at Beaumont Hospital.
He had dialysis three times a week, for four hours each session.
The following year, he had a kidney transplant and, just two weeks later, he was back at his studies.
Having graduated from agricultural college, Stephen then undertook a course with the Farm Apprenticeship Board, and qualified as a farm manager in 1995.
By then he had met Catriona and, in 1996, they married and began building their house near Derrinturn, in Co Kildare.
Two years later, his kidneys failed yet again because of the membranous nephropathy, and so he began trekking up and down to Beaumont for dialysis.
It was a punishing routine. Stephen would leave for work around 7am. After work, at 4.30pm, he would head for the hospital. Given that the treatment took four hours, and that he could encounter delays along the way or at the hospital, it could be as late as 11pm when he had to face the hour-long journey home. At one point, he tried home-based peritoneal dialysis (where fluid is drained into and out of the tummy to remove toxins), but he got an infection and ended up back on haemodialysis at Beaumont.
In 1999, Stephen had another kidney transplant, which resulted in "lots of problems" -- at one point, he was given just six hours to live. But, thankfully, the dedicated medical team at Beaumont pulled him through and he kept the new kidney.
But, sadly, this one also failed -- again due to membranous nephropathy, so, yet again, he was back on dialysis, while his problems were further compounded by heart failure.
In 2006, Stephen's sister gallantly donated one of her kidneys to him, but, unbelievably, that also failed.
Around this time, he heard about home haemodialysis and decided he would give it a go.
"I had four weeks of training at Beaumont Hospital," he says. "During that period, the machine was set up in the spare bedroom at home. A nurse came to check on everything. I then began dialysis for four hours, four evenings a week."
By then, Andrew, the couple's "miracle baby" was two years old, so, thanks to the new regimen, the little boy could finally spend quality time with his dad.
Then, in September of last year, it was decided to take the process a step further and put Stephen on nocturnal high dose home haemodialysis (NHDHD). To this end, the cumbersome machine was moved upstairs to the master bedroom, and Stephen was given a further week's training.
Nowadays, Stephen begins preparing the machine at 9.30pm. An hour later, he is in bed, connected to two lines -- one removes blood from his veins, taking it through a dialyser -- a device that removes fluids and toxins; the second tube returns the clean blood to his body. All this happens while he sleeps. He leaves for work at 7.15am.
Stephen is delighted with the way things have turned out.
Not only does he now enjoy a fairly 'normal' family life, his health is vastly improved.
"The big thing is," he says, "four hours of intensive dialysis is much harder on your body than what I am doing now." His current regime is eight hours dialysis, four or five nights a week.
"This pump operates at a much slower pace, and that puts less pressure on my heart. I am on very little medication, whereas I used to be on lots of medication -- and even with that, my blood pressure used to be through the roof," he recalls.
"When you have dialysis in the hospital, they can only give you the bare minimum, whereas, at home, I get as much as I need. After dialysis at Beaumont, I would begin to feel the effects of the toxins the next day, and that was pretty awful. Now I dictate what happens -- within reason."
Visiting the Lotts at home in Co Kildare, there is a sense that this is a family operating as a team.
"Andrew could almost set up the machine," says Stephen of his delightful, bright, football-mad, six-year-old son.
But it's not all plain sailing. The machine, which is the size of a small fridge, makes noise and, as a result, Catriona got very little sleep during the first year it was in the bedroom.
"I found it very difficult. The machine is constantly humming and, if he moves his arm, the alarm goes off," she says.
However, she does concede that some of her sleeplessness may have been "partly psychological".
"I was always worried he'd get a blood spillage, or some other problem would crop up," she admits.
But, following a fairly lengthy information session with consultant nephrologist, Colm Magee, at Beaumont Hospital, Catriona is feeling much more confident. "I came away from that meeting more comfortable with the process and, ever since, I have been feeling better," she says.
Stephen concedes that NHDHD has its challenges. "This doesn't just affect the patient -- it affects the whole family," he says. "Catriona has been a great support over the years. You need a supportive spouse, and one who is well-informed."
He says he is unlikely to undergo another transplant but, nonetheless, thanks to the current system, his quality of life is now better than ever.
"As a kidney patient, it was a fantastic surprise when Catriona fell pregnant," he says. "Andrew has certainly changed our lives. Home haemodialysis means I can spend much more time with him, and that's just fantastic."
Dr Magee says home dialysis is becoming more popular because it allows greater independence for the patient. It is also more efficient in removing the waste products and fluids that accumulate in kidney failure. It allows better control of blood pressure and a reduction in the amount of medication needed to treat the complications of kidney failure.
"There is growing interest in providing haemodialysis at home," he says.
Beaumont Hospital Kidney Centre, tel: (01) 809-3146, or see www.beaumont.ie/kidneycentre