AMHERST, N.S. — The leaps that have been made in the fight against kidney disease over the last few decades have been great strides towards the eventual cure.
Sharon Gould, a Nappan resident and president of the Amherst chapter of the Kidney Foundation of Canada, knows this better than most. She's been around long enough, and through enough, to see those leaps first-hand.
“When my husband Stanley Gould and I were married in 1961, he often spoke of his father's death in 1951 of polycystic kidney disease,” says Gould. “In fact, they talked about it only in terms of kidney disease in those days; nothing was broken down and specified as a specialty.”
Gould's husband Stan was diagnosed with the same condition – “polycystic kidney disease can affect 50 per cent of children of a parent who is carrying it,” Gould says – in 1967.
“In 1982, he went on hemodialysis; it was at the VG hospital, where he was cared for. Their program was growing and expanding and increasingly offering more options to those in renal failure.”
After years of hemodialysis from home and eventually a kidney transplant, Stan improved. But it wasn't long before that first kidney failed, and in 1990, it was back to the VG to start all over again.
“Back we go to Halifax again, with an amazing amount of improvements in the technology of the dialysis machines, the medicines that were prescribed, and the way of delivering services to patients in renal failure,” says Gould. “We saw the improvement, the increase in techniques, technology, et cetera, et cetera. Just in those seven years.”
Gould was Stan's partner in all of this and was there to support several of her own children who developed the same illness as well. One of her healthy sons even donated his own kidney for his father's second transplant.
“We lived not only to see but to experience the benefit of research,” says Gould, whose grandchildren and great-grandchildren are also likely to develop the disease.
Passionate advocate
That first-hand experience is one of the driving forces behind Gould's continuing advocacy in the fight against kidney disease.
“I began to volunteer with the Kidney Foundation,” says Gould. “In all the smallest little jobs back then. Selling peanuts, and bake sales, and all that, so that we were able to raise funds that were transferred eventually to the national office of the Kidney Foundation to go toward this area's contribution for research.”
Cumberland County has several residents who rely on dialysis while they await a transplant or other options, according to Gould. Some are lucky and can get treatment at the All Saints Hospital in Springhill, but more severe cases often have to travel to Moncton or further to undergo dialysis.
“The Kidney Foundation has been lobbying hard to the government, supported by our MLA Elizabeth Smith-McCrossin, to enlarge that unit and enhance it, so that at least some of the people who travel to the Dumont in Moncton would be eligible to come here.”
Organ donation
Federal funds are on the rise, Gould says, but she also admits it's not just about money. Public education and awareness is key to this fight, especially surrounding organ donation.
“I always say, have you ever had a discussion within your family --around the kitchen table on a day when everything is going good - and say, what do you think about being an organ donor,” says Gould.
“Well, when the time comes that you will die, would you ever consider leaving behind your heart? For someone who is not going to live unless they get one? I think we need to talk about that. Today, tomorrow, and the next day.”
Gould is aware that her crusade – one she quickly points out is a team effort, not just her own – has made her the face of kidney disease in her community. She admits that can be heavy, but it's a burden she will bear if it helps give other families peace of mind.
“I'm not a martyr. I'm not a saint. I'm just an ordinary person. My family has been affected with kidney disease, for which there is no cure, and we have to make the best of what we've been given,” says Gould.
“We need to give hope to families with renal failure in their family and that better days are coming and we are working to improve the lives of those living with kidney disease. We are out there...but there's so much work left to be done.”
