BigDandMe is all about living well on dialysis.
Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.
It is always great to hear of other BigD-ers with this living life to the full attitude.
Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home.
Wayne’s bio appeared in last month’s newsletter and is well worth a look.
Meet Wayne Cooper, LSBM (that’s Longest Serving Board Member).
Wayne’s dialysis story begins at 28. Only married for three years, he was typical of young people, ignorant of renal failure and in particular dialysis. He had his first treatment at Flinders Medical Centre, but was then taught self-care at a satellite unit at North Adelaide, where he met Nancy Douglas-Irving for the first time.
After three years of three times a week dialysis, he finally received the call! A compatible kidney had become available and gave him six years of near-normal life.
With rejection of the transplant in 1998 and a return to dialysis, he had to give up his employment as a foreman at a tyre company. He then turned his life around, retraining, and finding employment on the switchboard at The Queen Elizabeth Hospital, and thus was able to accommodate his need for dialysis. Three years later he had another successful transplant.
However, after four months he and his wife Helga were called to an emergency meeting of renal and vascular specialists at Flinders, including department heads. It was believed the kidney may have melanoma deposits in it. He had to go through the enormous physical and emotional stress not only of losing the transplant, but it was also considered necessary for his body to reject it completely before it could be removed.
At least it was not all unnecessary. Melanoma was present, and Wayne was advised he could not have a further transplant for at least two years, and one did not become available until a year and a half after that, giving him another eight years before he went back on dialysis, three years ago.
Wayne admits he started out an angry young man, reluctant to accept the invasive tests, the constant commitment to dialysis, the unfairness of it all. His life has revolved around renal disease and dialysis for 26 years.
He has worked for all but a year of that time and feels this is definitely part of the healing process, as he is busy with various projects and not focussed on his next dialysis session.
He is also President of the Glenelg Bowling Club and plays pennants every Saturday. He has just organised a fantastic and successful fundraising night for DELA with the bowling club members. This Club association enables him to mix regularly with his friends and experience as closely as possible a normal lifestyle.
And now for Wayne’s words…
“One of the life changing moments for me was joining Nancy and Enzo at DELA.
“I have seen firsthand that what we do as a charity is one of the best examples of people helping people.
“With DELA, I have been able to see people of all ages through their eyes and their disease. They have taught me to enjoy what I have, to laugh when you are able and just get on with life.
“DELA looks after the partners as well, they deserve a break too, they are the heroes who pick up the pieces when you fall apart.
“The backbone of my life is my wife Helga, she has never let me short change myself, she keeps me going when I am struggling.
“She really deserves a medal for perseverance.”
I spoke to Wayne just today and he told me he will soon be lining up for another transplant, from a living donor – his sister.
Life with kidney failure may not be easy, but it can be one hell of a ride.
*From the DELA website:
DELA’s aim is to provide opportunities for people on dialysis around Australia. We are an Adelaide-based charity, staffed entirely by volunteers.
We set up temporary dialysis units, and have a volunteer medical team.
These dialysis units are set up in Port Douglas in a hotel, and once or twice a year on a cruise ship to New Zealand or the South Pacific. We are hoping soon to extend our destinations to include the Gold Coast. These temporary unit setups cost the charity approximately $25,000 each time.