“When you finally get that transplant, it’s like winning the Lotto,” says John Whelan, the newly elected National Chairman of the Irish Kidney Association (IKA). He has been a member of the IKA since he went searching for answers after his diagnosis of end-stage renal failure in 2006. A native of Wexford, he grew up in Blackrock, Co. Dublin and has been residing in Bray, Co. Wicklow with his wife Una for 39 years. He was a barrister and senior counsel by profession until he began dialysis.
“I was working and then just had to cut back completely. Being on dialysis means specifically being in a clinic at a machine for three hours. And that’s just at a machine, not including the time it takes to get there and prepped and to recover afterwards. I had a nurse who told me that stress wise, being on dialysis is equivalent to a six-hour workout,” he says.
Even with his wife’s background in nursing, “it was all still a mystery to us”. So they attended their local East Dublin and Wicklow branch meeting and saw all of the work that the IKA was doing.
The IKA has over 3,000 members and 25 branches nationwide. The organisation is charged with the promotion and distribution of the organ donor card in Ireland and coordinates organ donor awareness activities. It provides many forms of assistance and support - financial, emotional and practical - to all kidney patients, their families and carers.
“Our own experience was deeply profound. We were in the fortunate position that we weren’t completely lost,” John says. He admits that this is not always the case, which is why the IKA branch meetings “are a time where we try to give everyone an opportunity to tell their story if they want to”.
“Its people who have been through this helping others go through this,” he says. “We try to be aware of what people need and what they want to do as best we can with 25 branches. They are there for people to use but we respect everyone’s privacy. We also try to offer support through our magazine, Support, and to keep people informed.”
“When people approach an organisation, they need empathy and someone to listen to them. While I was close to retirement age, a younger person may have been working full time and then that is all shattered. It is really limited to what we [Irish Kidney Association] can do but that is why we look to the public and have them support us in whatever way they can. I think people are really starting to see the bigger picture in helping people.”
John was on dialysis for 16 months before he was called for a transplant in May 2008. John’s original problem was not an organic kidney failure, so there wasn’t a chance for the original weakness to attack his transplant. “The biggest worry for people on dialysis is thinking ‘when will my time come? And it depends on so many variables before one can be suitable for transplant. But a transplant can mean you go from being tied down to a machine to being free again,” he says. “I’ve been extremely lucky to have had such a huge success.”
He has used his freedom to his advantage as he is “far busier” than when he was working and “someone who is never really bored and always doing something”. While John “has never been a big sports fan” he does partake in golf and a walk “every once in a while”. And even though he has retired, he still engages in the occasional practice of law.
For the past few years, John has been serving as the legal adviser to the board of Self Help Africa. “I started because even though I had a career behind me, I still had all this time on my hands,” he says. His background as a barrister has also helped with the IKA ever since he was elected onto the board as “it is always helpful to advise on the legal part of what is happening”.
The Whelans became more actively involved in their local branch, leading to John being elected as branch chairman in 2010, having been elected to the National Board in the previous year, after undergoing his deceased donor kidney transplant.
John says he is “gratified and humbled” to have been elected to lead the IKA over the next two years. “I believe the association has a vital role to play in conjunction with the medical profession in promoting the overall welfare of those suffering from renal failure.
“My focus will be primarily the well-being of the patient, and my aim will be to help the association to grow and to progress its essential work in the care and support of renal patients,” he says.
On the issue of legislation around consent to organ donation, John welcomes the public consultation process announced by the Minister of Health, but believes that the key to progress “is not through legislation but through developing the infrastructure and the training and placing of more organ donor coordinators in hospital intensive care units”.