Fighting for life

Fighting for life

The incidence of kidney disease is set to double over the next decade, leading to an increased demand for dialysis

Monday October 13 2008

IT'S a 400km round trip from the little townland of Ballyglass, near Claremorris, Co Mayo, to Temple Street Children's Hospital in Dublin.

Yet three times a week, at 7am, Bridie Morley rouses her sleeping three-year-old daughter Michaela and begins the long trek for life-saving kidney treatment.

Before Michaela's birth, doctors told Bridie and her husband Sean that their baby would not survive delivery. She had polycystic kidneys -- large numbers of cysts that rendered the organs almost useless -- and didn't stand a chance. They were wrong.

Michaela is a fighter and after an initial 10-week spell in intensive care following her birth on December 17, 2004, she was allowed home to her doting parents and big brother John.

Now Michaela is a regular visitor to Temple Street where she is hooked up to a dialysis machine for four hours at a time. The dialysis machine does the job that a healthy kidney would do, removing excess water and waste materials from the bloodstream. Without this, Michaela would die.

With just a handful of young children across Ireland needing hospital dialysis, the solitary unit in Temple Street is considered adequate -- but that does not ease the strain of the mammoth journey.

"I'm lucky," muses Bridie. "I have great family support. I bring Michaela to Dublin myself once a week, and then Sean's sister does it once and my own sister does it once. But I'm aware that not all families are that lucky."

Michaela's doctors hope that by next year, she will be strong enough to be placed on the kidney transfer list. Until then, she must continue with her life-saving treatment.

Double

Kidney problems, say the experts, are increasing at a rate of 15pc per year. Currently, around 3,000 people in Ireland have some form of kidney disease, and almost 2,000 need dialysis.

But the Irish Kidney Association predicts that over the next decade, those numbers will double.

An ageing population can account for much of this. But the well-documented increase in diabetes is also taking its toll as it can, as time goes on, eventually result in kidney failure.

Dr George Mellotte, consultant nephrologist at Tallaght General Hospital, says that changing attitudes have also played a part in the increased demand for dialysis.

"Twenty-five years ago, society simply wouldn't have thought it was necessary to provide dialysis to many of the people it does now -- for example, patients in their 70s. It isn't fashionable to say this, but I believe that the HSE has actually thought about this and is making plans for the future."

In some instances, this has meant expanding the traditional hospital-based dialysis service -- for example, at Tullamore Hospital.

But the HSE is also exploring the public-private model, where private companies, under contract with the HSE, take over the running of dialysis services.

Fresenius, a German-based company that is the world's largest dialysis provider, entered the market two years ago in just such a partnership.

At their Northern Cross clinic on the Malahide Road in Dublin -- a satellite clinic attached to Beaumont Hospital -- 32 patients visit three times a week for their four-hour sessions.

Accident

One of these is the former inter-county Dublin footballer Liam McCarthy (73).

Ten years ago, Liam was diagnosed with cancer of the kidney. What he didn't know was that his second kidney was barely functioning, following an accident on the football field decades earlier. Both kidneys were removed.

Liam was back at work teaching within three weeks, cancer-free and also a "kidney-free zone".

"I was told then that dialysis was the way forward," he recalls. "For seven years I attended Beaumont, but now I'm well enough to be in the Fresenius clinic."

The clinic is run by nurses who operate in close communication with consultant nephrologists at Beaumont.

"It's really a pitstop dialysis for the walking well," says Liam. "But the minute something would go wrong, you'd be back in Beaumont."

Liam attends the clinic Monday, Wednesday and Friday at 7am. It allows him to lead a normal as possible life, and to keep working a 20-hour week, nowadays as a counsellor and lecturer.

"I try to keep work as normal as possible. And the treatment gives you a reasonably tolerable lifestyle."

Blessings

"When the patients come here from Beaumount, they do find it a big change at first but they gradually become more comfortable and then start looking at how they can incorporate their dialysis into their normal routine," says Mary O'Gara, clinic manager at Northern Cross.

But not everyone is well enough to return to work.

Chikoyo White (34) had to give up her job as a waitress as her treatment was making her too weak to work. But still she counts her blessings.

Originally from Zambia, Chikoyo met her Irish husband Colin when both were working in Zimbabwe. Chikoyo fell ill in 1998.

"I felt very weak and anaemic and was passing a lot of water. I thought that I was pregnant and my periods stopped. No-one knew what was wrong until early 2000. So then I started dialysis in Zimbabwe."

But dialysis proved costly.

"You get treatment if you have money but there is a long queue in the public hospital there," she explains. "It was too expensive for me and so that was the main factor for Colin and me to decide to come here.

"Most Irish complain about the health service but I think I'm very lucky. In Africa, most people with this problem are dying."

Not all kidney patients have to attend hospital for dialysis. In some circumstances, it can be done at home.

Peter Heffernan (52) from Swords, Co Dublin, has had kidney problems all his adult life.

"When I was 18 I was diagnosed with kidney problems and had to take a daily tablet.

"I was a little bit tired from time to time, but other than that I led a normal life. But five years ago, things began to get worse. My energy levels went right down. I knew then I was going to have to go on dialysis."

Because of the nature of his condition, Peter needs peritoneal dialysis. In this type of treatment, fluids are pumped into the abdomen through a tube and the blood is cleaned inside the body. The great advantage is that it can be done at home.

Four times a day, Peter pumps two-and-a-half litres of special fluid into his abdomen through a surgically-positioned tube and leaves it there for four hours while it cleans the blood. Meanwhile he goes about his normal daily activities

"You need to find a private place but you can do it anywhere -- in the office at lunchtime, for instance."

Peter is hopeful that he might receive a new kidney soon.

"I've been on the transplant list for 27 months and there is an average of a three-and-a-half year wait. I believe my time will come. And I'm healthy enough.

Believer

"Otherwise you just live with it -- the negatives are that you have to really plan your day. But I'm a firm believer in just playing the cards that you are dealt."

As with many conditions, a good diet and gentle exercise play an important role in the management of kidney conditions.

Clare Hogan has just completed a stint in the new post of renal physiotherapist at Cork University Hospital. Dialysis patients have different exercise needs to most people, she says.

"Their muscles are more wasted as a result of sitting or lying down so much and they would often have balance and mobility problems.

"While patients are on dialysis, we do exercises with them and show them what they can do when they are at home."

But the ultimate goal for most of those who are healthy enough is to receive a kidney transplant, which offers the hope of a life free of dialysis machines.

In recent weeks the campaign to change the organ-donor law in Ireland to one of presumed consent has stepped up a gear.

Presumed consent would mean that instead of signing a donor card in the event of death, a person's organs would automatically be considered for donation unless they expressly said otherwise.

"I would be for presumed consent if I thought it would work, but I think it would just confuse the public," says IKA chief executive Mark Murphy. The IKA would like to see the current system enhanced by independent 'donor co-ordinators' working in intensive care units around the country.

These co-ordinators could liaise with the families of ICU patients, talking them through the process of organ donation and allaying any fears they might have.

Just this summer, more hope was offered to kidney patients with the success of the first spouse-to-spouse transplant.

But for those on the waiting list, pressing the 'pause' button on life is not an option.

"The dialysis is manageable and the medical back-up is super," says Liam McCarthy. "So attitude is half the battle. You simply have to get on with it."

European Day For Organ Donation & Transplantation takes place this Saturday, October 18. Organ donor cards can be obtained from the Irish Kidney Association www.ika.ie and at most pharmacies, or freetext DONOR to 50050

http://www.independent.ie/health/case-studies/fighting-for-life-1497060.html