Finding out you have stage 3 hepatitis C (HCV) might not be most people’s idea of luck, but Ron Shean feels fortunate. Despite the damage to his liver, his disease was caught before it progressed to cancer.
Shean, who had planned to donate a kidney to his uncle, found out about his condition from the Kidney Foundation. “I got so lucky [that] I backed right into it,” says the 62 year old, who surmises that his “demise would have come sooner than expected” had the foundation not asked him for bloodwork.
When he first heard the news, though, Shean felt more devastated than grateful. “The only thing I’d heard about hep C was that it was referred to as ‘the kiss of death’ so there’s a bit of shock that comes with that,” he says.
HCV more prevalent in baby boomers
He also felt confused. Like 44 percent of the estimated 250,000 Canadians living with HCV – many of whom were born between 1945 and 1975 like himself – he had no idea he was infected, even though he had been feeling extreme fatigue – one of the common symptoms many with the disease experience prior to being diagnosed.
Shean isn’t sure how he contracted HCV, although he had been in close contact with two people who carried the virus, and he may have shared personal items like razors or toothbrushes, one of the risk factors for the disease. He suspects, however, that he contracted it 35 years ago from dirty needles. “I had a tattoo done in seedy little house down in Nova Scotia in my mid- to late twenties.…It was very unsanitary, which I thought nothing of at the time,” he says.
It’s quite possible that Shean was infected as long ago as the early 1980s. Many people live with HCV for decades before symptoms like fatigue, nausea, abdominal pain and jaundice appear, often not finding out until it’s too late for treatment.
Safe, simple and effective treatment
Although his hepatitis C was advanced, Shean, amazingly, achieved cure in October 2017. His treatment was simple: He took one direct acting antiviral pill a day for 12 weeks. Most patients with chronic HCV can be cured with this safe and effective treatment, regardless of genotype or patient history, notes Shean’s first liver specialist Dr. Curtis Cooper, director of The Ottawa Hospital and Regional Hepatitis Program. He hopes that hearing stories from those who have been cured empowers others to step forward to seek screening and treatment.
In Shean’s case, the only side effect he experienced was tiredness, which went away about three months after finishing his medication. Currently, his energy is “180 degrees” better than it was last year.
Before the treatment, though, his fatigue was extreme. “I could drink two double coffees at 8 o’clock and be asleep by 10,” says Shean, a journeyman carpenter who has worked in construction since high school. Prior to his diagnosis, he found himself struggling to get out of bed each morning and coming home after work in a “very, very heavy state of exhaustion.”
In 2013, Shean was building a house outside his hometown of Cobden, in the Ottawa Valley, when he suddenly felt like he was walking in quicksand. Although he was used to pushing himself – in addition to hard physical labour he had also played competitive sports – he had to stop working at a job that was his “joy” because he “just couldn’t get that extra gear anymore.”
So, it’s no surprise that Shean felt elated when he learned his condition had reversed. “The relief factor is not even explainable,” he says. “Aside from the physical illness, it’s an awful strain to go through.”
Discreet and compassionate medical support
Initially, Shean felt embarrassed having to tell people about his HCV. “The stigma really catches you at first and you feel like people are looking at you or whispering.” He was supported, though, by his family as well as by his doctors and Renfrew Country Health Clinic employees, who were “nonjudgmental and very discreet.” Knowing that he hadn’t “been left by the wayside” helped Shean mentally. “I just didn’t feel alone in the least,” he says, adding that he now wants to let people know that having hepatitis C is nothing to be ashamed of.
As well, Shean, whose condition could have been caught sooner with a hep C blood test, doesn’t want people to “get caught off guard” like he was. “There’s not enough awareness about it, and I think it’s sad,” he says. “I wish I could say the right thing to get people to understand that it’s important to take the test because sooner or later is too late. You have liver cancer and what do you do? You’re going to get into a line with how many other people looking for a transplant.”
For more information about hepatitis C, visit the Canadian Network on Hepatitis C or the Canadian Liver Foundation. Take CLF’s online quiz to see if you have any of the common symptoms associated with the disease here.