By Stephen Forgacs | Photography by Jeff Topham
How St. Paul’s comprehensive renal program – one of just two in the province that includes transplant – helps people who suffer from kidney disease
For centuries, the intricate network of waterways around the central coast community of Bella Bella has been the lifeline for the Heiltsuk First Nation. So when 66-year-old Bella Bella resident Ken Wilson reflects on the benefits of the new kidney he received a year ago, he’s quick to mention that he can once again go out on the water.
Wilson had a kidney transplant in February 2017 at St. Paul’s in Vancouver, freeing him from hemodialysis, a life-saving but restrictive weekly routine. Hemodialysis is a process whereby a machine does much of the work of the kidney, cleansing the blood. In Wilson’s case this meant being hooked up to the machine three times a week for four hours at a stretch. He was fortunate that the renal program staff trained his son, Clark, to help him manage home hemodialysis.
“Clark knows more than I do,” says Wilson. “He’s the one that took care of me because when I was in Vancouver for nine months at the St. Paul’s renal centre, I wasn’t capable of taking care of myself. My son gave up his time to help me.”
Wilson certainly isn’t alone in his struggle with chronic kidney disease. At the end of 2017, over 18,000 British Columbians were receiving care for kidney disease, according to the BC Renal Agency, the provincial coordinating body for treatment of the condition. The actual number of British Columbians with kidney disease is higher still, says St. Paul’s nephrologist and head of Providence Health Care’s division of nephrology, Dr. Monica Beaulieu. “Up to 10 per cent of the population in BC has some degree of kidney dysfunction.”
Fortunately, says Beaulieu, the vast majority of British Columbians diagnosed with chronic kidney disease are able to avoid the challenges Wilson faced, specifically dialysis and trans- plantation. According to BC Renal Agency statistics, less than 18 per cent of patients with kidney disease in 2017 were receiving either hemodialysis or peritoneal dialysis, during which a cleansing fluid is pumped through part of the abdominal cavity daily to remove waste products from the blood.
“Many, many people are able to manage the progression of their disease by controlling their risk factors, modifying their diet and taking medications,” Beaulieu says. “We just don’t see it because dialysis and transplant tend to be in the forefront.” Among the risk factors for chronic kidney disease are smoking, obesity, high blood pressure and diabetes.
A Unique Approach
One of just two centres in BC for comprehensive renal care including kidney transplantation, St. Paul’s takes a patient-centred approach to caring for people at every stage of the disease. “Our job is not just to focus on people with chronic kidney disease who need transplant or dialysis, but also to keep the other 80 per cent well by helping them avoid the pitfalls that might lead to kidney failure,” says Beaulieu.
The renal program at St. Paul’s supports those suffering from kidney disease in multiple ways and in multiple venues. It serves patients at clinics around the province and makes outreach visits in addition to caring for them at the hospital in Vancouver. In-hospital services include vascular access (establishing and maintaining access points on the body for dialysis), transplant surgery and dialysis, among others. Patients from across BC come to St. Paul’s for transplantation and for post-transplant follow-up care. St. Paul’s also treats people who experience sudden kidney damage, including those who require dialysis or therapeutic plasma exchange. Unlike those with chronic kidney disease, patients who experience acute kidney failure can make full recoveries.
People with chronic kidney disease from across the Lower Mainland, up the coast and even from Whitehorse in the Yukon receive care at or under the guidance of St. Paul’s renal program, which has provided a full range of services for kidney patients for over 30 years. Patients with multiple conditions – kidney disease in combination with diabetes, for example – are steered to the Integrated Care Clinic, the first such clinic of its kind in Canada, which offers the services of subspecialties including endocrinology. Specialists from dermatology and psychiatry also provide integrated care for many kidney patients.
In Ken Wilson’s case, the fact that diabetes and kidney disease often occur together made his search for a live kidney donor particularly challenging, says Beaulieu, since there’s a high incidence of diabetes in his community. Live donors are the preferred solution for kidney transplants, and transplantation is preferred to dialysis, Beaulieu notes, adding that patients will often find a live donor among their family or friends. Sometimes, she says, someone will offer a kidney anonymously, creating a wonderful domino effect whereby multiple potential donors align with matching recipients who previously weren’t able to find a match. In Wilson’s case, his only option was to start dialysis and wait for a kidney from a deceased donor.
“Normally some people wait three or four years for a transplant, but I only waited six months,” he says.
Wilson was fortunate to spend a relatively short time on dialysis, says Beaulieu. “Dialysis is quite hard on the body,” she says, adding that recent evidence shows that for some patients, choosing conservative care when their kidney function gets quite low is a better option than starting dialysis. “Many of our patients who would once have started dialysis because their kidney function hit a certain level are now just being followed very closely, with management of their symptoms. They are living as long or longer than they would if they had started dialysis.”
Research and best practices
Due to the quality-of-life and physical challenges associated with dialysis, which include restrictions on travel and personal freedom, St. Paul’s approach to treating patients with end stage chronic kidney disease is what Beaulieu calls “Transplant First.” Patients do not recover from slowly progressing kidney disease due, in part, to scarring that permanently reduces kidney function, says Beaulieu. So, when it becomes clear that a patient’s only option will be transplantation or dialysis, patients are encouraged to find a living donor. Failing that, they must start dialysis and then join a provincial wait list for a kidney from a deceased donor, and that wait can be as long as eight years. Still, the majority of kidney transplantations that take place in BC involve kidneys from deceased donors, highlighting the importance of organ donation. Last year, 97 British Columbians received kidneys from live donors while another 225 received kidneys from deceased donors, according to BC Transplant.
While there is no cure for chronic kidney disease, Beaulieu says that nephrologists at St. Paul’s, each of whom is also active in research, are expanding their focus beyond research that is aimed primarily at helping people manage their disease. Today, kidney disease researchers are working closely with diabetes researchers and those studying other related conditions to try to find a way to prevent the disease from occurring in the first place.
That work holds promise for future generations. In the meantime, Wilson is happy to be able to go out on his skiff and to spend time with his wife of 38 years, his five children and 12 grandchildren. He recalls a moment while he was at St. Paul’s, after his transplant, when he was surrounded by his medical team. “I was listening to them as they talked, and when they stopped I told them how grateful I was for their care, and how happy I am to have this second chance.”
What is it that St. Paul’s renal program does differently?
“The renal program at St. Paul’s is designed to put the patient at the centre of care,” says Dr. Monica Beaulieu, head of PHC’s Division of Nephrology. “Once in our program of care our patients have access to a robust inter-professional team, including dietitians, social workers, nurses, pharmacists, other specialists and of course nephrologists. This integrated team approach is convenient for the patient and allows for highly customized care for the individual. Above all, it’s proven effective in terms of slowing the progression of the disease and reducing the need for dialysis and transplant.”
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To learn more about the typical flow of a patient with chronic kidney disease, click to enlarge our infographic below.