Darren tells dialysis like it is

When the kind of people who benefit from fundraising are able to talk face to face with the fundraisers, it can bring a project to life.



So it was with the recent Information Evening for those taking part in the Flora Womens Mini Marathon on behalf of the Punchestown Kidney Research Fund, held in Kilcullen's Parish Centre.

James Nolan was already well known to most, of course. He's the founder of the PKRF and himself a recipient of a donor kidney.

His story has been well documented. How his sister Catherine donated one of her own kidneys when James was 20. How he has worked to raise funds for kidney research since, most notably through the annual charity race on the final day of the Punchestown Festival. How he finally won that race himself in 2002, fulfilling a dream.



But Darren Cawley from the west of Ireland was a new face to the Kilcullen women taking part in next month's Mini Marathon. His story has similarities to James Nolan's; he has suffered kidney failure. And he did have a transplant, but it failed after a couple of years.

Darren is a dialysis patient of the most critical kind, requiring treatment in hospital every second day. He's 29, has been waiting for another kidney transplant for eight years, and holds down a part-time job in a leisure centre between dialysis treatments.

The physical ravages of the regime aren't a pretty sight; Darren's left arm is lumpy and deformed from the constant use of the machine that keeps him alive.

If most of us had to deal with his lifestyle, we'd probably be pretty depressed. But Darren's manner in the Parish Centre the other night was inspirational. He had undergone his four-hour dialysis, then had driven for three and a half hours from Castlebar to talk at the meeting.

He must have been physically drained, but he was cheerful, optimistic, and a living example of why the PKRF's fundraising is so worthwhile.

Outlining his current lifestyle, Darren gave graphic details. For instance, any liquids he takes are not eliminated in the normal way, and have to be taken out during dialysis. There are also strict dietary restrictions, such as having to watch foods with high manganese and potassium levels.

But he admitted that one of the worst features is the inability to travel without a great deal of preparation.

"Not being able to go away for a few days with my friends is a real killer," he said. "I can't even go on a stag weekend."

He was the first patient to use the holiday home in Tralee bought and fitted out by the PKRF and with dialysis facilities in nearby Tralee Hospital. He told the marathon participants that it had even allowed him to make his first trip to Kerry.

"It's a really great facility, and the fact that it has four bedrooms means that dialysis patients can even have a holiday weekend with their family."

Darren has put his name down as a prospective Rose of Tralee escort. But if he is chosen, whether he'll be able to take up the offer will depend on whether there is a dialysis 'slot' available in the local hospital at the time. "I've already made an initial request about the facilities, but the hospital says they are currently fully booked until the end of November."

That just highlights another problem; a recent study has found that the number of patients requiring dialysis in Ireland will double in the next four years.

Available facilities nationwide are stretched. When Darren began dialysis in Castlebar there were 12 patients in the unit, which was working on a single shift basis. Now the same unit is working three shifts.

One of the possibilities that the PKRF is looking at for next year is the sponsoring of a mobile dialysis unit. James Nolan says this would be particularly useful to elderly patients for whom leaving their homes on a regular basis is a difficulty.

"We've quite a number of elderly people living in remote areas," he notes. "Their treatment can involve a long trip in a car or a taxi, sitting in a waiting room, then four hours on the machine. So there's certainly a need. They have them in Denmark and other countries."

The best way of easing the whole dialysis situation, and providing kidney failure patients with a decent quality of life, is to have more organs available for transplant. And apart from raising money for research and facilities, the most important focus of the PKRF is to make more people aware of the benefits of carrying an Organ Donor Card.

"In Ireland it is a voluntary thing," he told the meeting last week. "There are different models in different countries, like Germany, for instance, where unless you register not to be a donor, your organis will be harvested if you die in circumstances where they can be used for transplants."

He emphasised how important it was for those who carry an Organ Donor Card, or who tick the donor box on their Driving Licences, to talk the matter over with their families.

"Even if you have a card, the doctor considering harvesting an organ for transplant will always want to get the actual permission of next of kin," he says.

The National Transplant Centre is located in Beaumont Hospital in Dublin, and all activities relating to aquisition and transplant management of donated organs are run from there. A number of hospitals throughout Ireland are licenced to harvest organs.

Other activities funded by the PKRF in recent years have included sponsoring an Art Therapy programme in Dublin and Waterford hospitals, and the operation of a cancer screening programme for kidney failure patients.

The three key fundraising events are the Punchestown charity race, the Punchestown Ball on the same night, and the Flora Mini Marathon.

Last year these three events raised some 17,000 euros, and the aggregate total raised to date has exceeded 828,000 euros. James Nolan is looking forward to achiving the benchmark million.

Further information is available on the organisation's website, www.pkrf.ie/

Brian Byrne.