Alliston family feels financial strain of kidney disease  

Edythe is grateful to have access to dialysis treatments in Alliston, Ontario, even though her spot at the Stevenson Memorial Hospital is only temporary. The dialysis unit is just a short distance from her home, and with the taxi ride subsidized it costs just three dollars each way. It is much more convenient and affordable than the hour-long drive to Barrie that she used to do three times a week. That trip was an added financial burden on her family, that also put a strain on their jobs.

 “It was a real stress. My daughter had to take time off work to drive me up to Barrie. She is a daycare supervisor and needs to be at her job,” Edythe said. “My son-in-law would often leave work early to pick me up.”

Edythe is 78-years-old, retired, and lives on a modest fixed income. Last October, her kidney function fell to dangerous levels and she became very sick.  Doctors rushed her to a hospital in Barrie where she was stabilized and started hemodialysis treatments.

After she was released from hospital, Edythe hoped to continue dialysis treatments near her home in Alliston. However, there was no dialysis station for her in her community. Instead, was registered at the Royal Victoria Health Centre in Barrie.

Edythe could not drive herself that distance, so her daughter and son-in-law stepped in to help.  Beginning last October, they travelled about 250 kilometres a week to get Edythe to and from her treatments.  They were spending a lot of money on gas, but the most daunting expense was a new car. Her daughter felt it was necessary, as she was worried about the safety of her older pick-up truck on the highway.

“She was holding off on getting a new car but said, ‘I can’t go on like this. If we break down on the side of the road, then where are we going to be?’” Edythe recalls. “So she went out and got a new car. Otherwise she would have held off and tried to make do with the other one.”

The trips to Barrie continued until the beginning of March, when a temporary dialysis station was found closer to home. Being able to receive dialysis treatments in her community has lessened the burden on Edythe, and her family.  While she is very happy with the quality of care she is receiving, Edythe would like to see more support for kidney patients who need to travel for treatments.

Visit the Ontario Election Centre to learn how you can take action and help reduce the financial burden of kidney disease.

Dialysis diet puts pressure on finances

Kerry-AnneKerry-Anne found it hard to make ends meet after experiencing kidney failure. The 40-year-old, who lives in Barrie, Ontario, struggles to pay her bills on a limited income. She lives with an hereditary disease called von Hippel-Lindau syndrome (VHL) and cannot work due to her poor health and many surgeries.

A few years ago, growths on her kidneys associated with VHL led to renal failure. Kerry-Anne began dialysis and was put on a special diet to keep her body’s phosphorus levels under control. While she understood the importance of eating right, she often couldn’t afford to buy the fresh foods so critical to her health.

“When I was on dialysis, I had to be really careful with my diet,” she recalls. “It was tough because the foods I was supposed to eat were more expensive. That was really hard for us.”

While it was difficult to admit she needed help, Kerry-Anne started asking for grocery cards on her birthdays to pay for food. Last October, she received a kidney transplant. While her diet is no longer as rigid, she and her husband still live paycheck to paycheck. Her husband was recently laid off and now works in a minimum wage job.

Kerry-Anne receives a provincial disability benefit that covers the cost of her medications and provides some income support. Still, there is rent to pay, along with heating, water, and electricity bills. After the transplant, she developed Type 1 Diabetes. She pays out-of-pocket for needles to monitor her blood sugar levels and for vitamin supplements.

Kerry-Anne believes grocery cards, and gas cards to help with transportation costs would be a big help to kidney patients. This kind of support would ease the burden of an illness that not only affects people’s health but also has a significant impact on their finances.

Patients share their personal experiences
in managing kidney disease and its financial impact

The financial strains of kidney disease
Catherine's Story

Catherine knows she should book an appointment. It has been at least six or seven months, she figures, since her last haircut. It never used to be like this. Before she was diagnosed with kidney disease, the Toronto-area woman didn’t think twice about haircuts, movies, or toys for her daughter. Now it is hard for her and her husband to find the money for these extras.

The medications are extremely costly and even if you are partially covered for it, you end up paying some of the expenses out-of-pocket,” she says. “Before if my daughter wanted a $20 Barbie I wouldn’t think twice. Now, everything adds up. You pay your bills, you pay for your food, but you have to cut down on things that aren’t necessary.”

Catherine was diagnosed with glomerulonephritis (GN) three years ago. Doctors are working to stabilize her condition, and keep her kidneys working. She takes a number of prescription drugs to control high blood pressure, protein levels, and swelling. She also takes over-the-counter dietary supplements, which are not covered by health plans. The monthly costs of these medications are an added burden, for a family already trying to manage the effects of a serious health condition.

As a young professional in her thirties, kidney disease was not on the radar. Catherine had felt vague symptoms for some time – fatigue, and occasional nausea – but thought nothing of it. About three years ago, doctors noticed protein in her urine. Soon afterwards, with a demanding full-time job and young daughter, her life was turned upside down by a disease she had never heard of before.

With kidney disease, it is hard because you don’t look sick. You don’t look like you are going to fall apart. Where inside, you just feel like you are going to fall apart. It has changed my life a lot. The hardest is the unpredictability. One day you can wake up and feel fine, and the next day you can barely get out of bed.”

Along with the financial and physical strains, came a new set of professional challenges. Catherine is no longer as energetic, and reliable at work as she used to be. She tires more easily, and needs to make frequent visits to the washroom. She tries to stay productive, but the side effects of the medications are physically, and mentally taxing.

People with kidney disease are fighters. We try so hard to maintain a normal life, but it is not a disease that is easy to live with,” she says.

Catherine would like to see workplaces become more supportive of employees living with kidney disease. She also hopes that, in the future, Canadians will come to better understand this complex health condition that can have such a devastating impact on so many lives.  

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