Home > Patient Stories > Kidney Failure: Symptoms & Stereotypes

June 2017 | Patient Stories

Barry Spence was feeling the symptoms of end-stage kidney disease when he was kicked off a bus in rural Manitoba last month.

“I was devastated,” says the 41-year old, sitting in a peritoneal dialysis training room at Seven Oaks General Hospital (SOGH).

Spence is originally from Nisichawaysihk Cree Nation (Nelson House) but lives in Thompson. He had been making trips to Winnipeg to get ready for home peritoneal dialysis (PD).

After his initial PD catheter surgery was not successful, a later surgery went well and Spence was almost set to start home dialysis.

He boarded a bus heading back home to Thompson where he planned to heal from his procedure and spend time with family before his next planned trip to Winnipeg for dialysis training.

Unfortunately, with his kidney health rapidly declining, Spence became sick on the bus ride home displaying symptoms of uremia.

“When our kidneys aren’t working, these toxins build up in our bodies and that’s what contributes to all these symptoms,” explains SOGH nurse Elaine Schaffer who works with patients transitioning onto home peritoneal dialysis. “Uremic symptoms get more severe as kidney disease progresses and can affect the whole body.

Uremic Symptoms

Vary for everyone – people may only have some of the following symptoms:

  • Nausea
  • Vomiting
  • Fatigue
  • Tired
  • Swelling
  • Edema
  • Weight loss or fluid weight gain
  • Lack of appetite
  • Agitation
  • Confused
  • Memory Issues
  • Restless legs
  • Hard to sit still
  • Itchy
  • Trouble Sleeping
  • Leg Cramps
  • Bad Taste in Mouth
  • Easily bruised

Spence was nauseous, dizzy and fatigued during the bus ride – making frequent trips to the bus bathroom to vomit. When he stepped off the bus during a stop at 3:30 a.m., the driver refused to let him back on and accused Spence of being drunk.

“I thought he was kidding,” says Spence of his initial reaction. He tried to reason with the driver with no success. “He just assumed right away – he’s a drunk, he’s native.”

Despite RCMP siding with Spence, and fellow passengers who tried to help, he was left at the stop and told by a gas station employee to get off the property.

“It is really important to not make assumptions and to try to assist a person, especially since they may be potentially ill,” says Dr. Catherine Cook, Vice-President Population & Indigenous Health, Winnipeg Regional Health Authority.

“We know that racism continues to exist in our systems and community, and unfortunately many people still believe some very negative stereotypes about Indigenous people. This can result in mistreatment that can have significant negative impact on the immediate and long term health and well-being of Indigenous people.”

According to Spence, RCMP suggested he start to walk home if he had no other options. Spence was 330 kilometres from Thompson.

“I was nauseous, dizzy…I was so weak,” explains Spence. “It was hard. I was already sick…I was on the brink of collapsing.”

This was the start of a five-hour ordeal that included being surrounded by a pack of stray dogs, an ambulance ride, a nursing station visit, and eventually being assisted by a local priest.

Barry is now performing his own home dialysis treatments in Thompson and adjusting to his new routines. “I can stay home and take care of myself,” he says. “I can go to work.”

Schaffer explains that while it’s not always avoidable, the renal program tries to get a patient onto dialysis before they get too sick. In some cases a patient who has never been seen by a health-care provider for potential kidney disease may arrive in an emergency room with kidney failure and need to start dialysis immediately.

“We like to follow them in clinic right from stage one and on if we can,” she says. “We encourage GPs and doctors in the community to refer their patient’s to clinic early – so we catch people a lot earlier in their progression through the kidney disease cycle.”

Learn more about kidney disease here.

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