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Pat O’Sullivan and his wife, Helen.

The ongoing need for kidney donors was highlighted when Pat O'Sullivan from Mallow, shared his story at the national launch of Organ Donor Awareness Week at the Mansion House, Dublin on Monday.

Pat was diagnosed in 2002 with chronic kidney disease. Since his diagnosis he managed to stave off dialysis treatment for a decade through medication, diet and lifestyle changes, but he did suffer ill health during this time and steroids caused his weight to fluctuate dramatically. He commenced dialysis treatment over 18 months ago and this treatment has been working very well for him. He undergoes a form of home dialysis called peritoneal every night for 9 hours at a time.

Married to Helen and in his late 40's, he has two children aged 22 and 19. His children grew up aware of his illness which impacted on family life. Although the dialysis treatment is working very well for him for now and he can competently carry out his work as a Regional Manager for Irish Rail, a kidney transplant would make a huge difference to his quality of life.

Pat, from Mallow town, always enjoyed travelling abroad but he has had to curb this because dialysis treatment makes travel next to impossible and furthermore, he would also have to be taken off the transplant waiting list while away. It was in fact while he was on holiday in Lanzarote in 2002, that he became ill and the problem was diagnosed.

Pat explains: "I went to the hospital because I wasn’t feeling well, I was retaining fluid and was very bloated. I assumed I had a bug. I had not been feeling very well before I left for Lanzarote. I spent the next ten days of my holiday in hospital. After the initial tests, the medical team advised me that I had a problem with my kidneys. This frightened me at the time because my mother had passed away from kidney failure at the age of 34. I was now 37."

Pat explains Peritoneal Dialysis: "This comes in two formats; manual exchanges four times a day - morning, lunchtime, evening and again before you go to bed - with each exchange taking about 45 minutes. I started on this one, but could not keep it up. It was like having a new baby in the house.

"The alternative is an automated process that involves hooking yourself up to a machine for nine hours every night while you are in bed and the machine does the exchanges automatically for you. I am undergoing this now but it will have to be reviewed shortly as it is not as effective as it once was for me.

My next option will be Haemodialysis in my house. This can be a lot more restrictive than peritoneal dialysis in terms of diet and fluid intake and the treatment regime is normally 3-4 hours a session with at least three sessions per week but it can be more effective."

WAITING FOR THE CALL

On the lis for a kidney transplant, Pat says that waiting for ‘the call’ takes up every waking minute of your day.

"Every time your phone rings you hope it’s going to be the one. Every time you get a text message you hope that this is the first indication to say you’re next. You must always be planning. Simple trips like going to Thomond Park to watch a match need a backup plan - suppose the phone rings while I am there, how do I get my bag to Dublin? Do I go back to Mallow, pick up my wife, pick up my clothes or do I just take off and get her to bring everything up after me? Sitting in Mass, phone on silent, constantly checking it, what will people think if I get up half way through and walk out. Sitting in meetings, the same problem!"

Going away for a few days break is the hardest part, Pat says. "You don’t want to go anywhere that’s too far away from Beaumont as all kidney transplants are carried out in Beaumont Hospital in Dublin. We can only go away for four days at a time anyway as the dialysis equipment takes up so much room in the car we can’t fit anymore in. Travelling abroad is out of the question as you must take yourself off the transplant pool in order to travel overseas."

CARRY A DONOR CARD

Pat says he would encourage everybody to carry an Organ Donor card. "Carrying the card is only the start of the process. You must advise your family of your wishes because it is they who will be asked to donate your organs."

Pat also suggest the possibility of becoming a living donor. "You might know somebody who requires a kidney transplant and people can survive perfectly well with one kidney. The person may be slow in asking and it would be a lot easier for you to offer. Some patients waiting for a transplant do not want to go down this road for various reasons. I am one of those so my wait continues."

When Pat went on the list, he was told that the average waiting time for a donor was 18 months.

"I set a goal for myself to compete in the World Transplant Games in August of this year. I have to set a new goal now as you must be transplanted twelve months before you can compete."

Like many more, Pat remains hopeful that he will be called for a kidney transplant in the near future.

"Five lives can be saved every time a family make the selfless decision to donate their loved one’s organs. Please remember, don’t take your organs to Heaven, Heaven knows we need them here."

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