John and Lisa Sloot dreamt about raising their children in a small community, but shortly after moving to Castlegar, the family was jilted by kidney disease—twice.
The dream of living in a close-knit community came with a hefty price—commuting to Vancouver and Calgary more than 30 times for their son Ken’s treatments after he was diagnosed with kidney disease.
“It’s not just the cost of going down there,” said John at the Kidney Walk in Gyro Park on Sunday morning, “there’s the cost of a hotel and it’s hard on the kids while they were young. They would get car-sick on the way down.”
The Sloot’s small town dream quickly turned into a nightmare.
In May of 2000 Ken was hospitalized for appendicitis and his blood work showed that of someone in his senior years. Through the Alberta Children’s Hospital Ken was diagnosed with chronic renal failure, or more specifically, juvenile nephronophthisis.
A childhood genetic kidney disease in which there is progressive, symmetrical destruction of the kidneys—characteristically resulting in anemia, polyuria, polydipsia, a decreased ability to concentrate urine, progressive renal failure and death in uremia.
Chronic kidney failure affects growth and leads to short stature and possibly premature death.
When Ken was 12 Lisa donated her kidney to him, but it failed without warning after eight years and resulted in dialysis treatments.
John was not the correct match to donate another kidney to Ken.
However, a trial exchange program being offered by the Canadian Blood Services in Alberta, a program for anonymous donors who have entered the registry unpaired and are willing to donate to anyone in need.
He signed up immediately and was the first applicant to register for the program—allowing John to donate a kidney to a family in exchange for a family who could give their son a matching donation in Ottawa. John was one of eight participants in the exchange.
According to the Kidney Foundation of Canada, only 17 per cent of British Columbians have registered to be organ donors.
Unfortunately, the day the Sloot’s left for Ottawa, they discovered their youngest son also suffered from the disease.
When asked what people needed to know about coping with the ramifications of kidney disease, John said to never give up hope.
He went on to explain how dramatically the technology changed for surgeries and treatments within a mere eight years.
When Lisa initially donated a kidney to her son, she was cut “from front-to-back” and had her “ribs removed.”
“I was in so much pain,” she explained, while John described a markedly different experience.
His surgery was relatively quick and painless, in comparison to his wife’s.
John recovered in no time.
However, the family’s struggle is ongoing. They remain upbeat about the advances in medical science.
Anyone with a kidney transplant in B.C. must commute to Vancouver for surgery and stay there for two months after the transplant for follow up clinic visits.
To ease the financial burden, the Kidney Foundation offers four furnished suites in Vancouver for patients, depending on eligibility, for free or $25 per night.
Things like support groups, public events and financial aid programs give the Sloots help their nightmare will become nothing more than a dream.