Glenn's Story: Now I can just get on with my life
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When Glenn was cured of hepatitis C he felt he had lost something he had been carrying around for so long.
“It was like mourning a loss, I wasn’t sure what to do. Now I can just get on with my life, do all the stuff I want to do,” Glenn says.
Glenn is a Gadigal man from the Eora nation. In the late 1980’s, while serving time in a correctional centre, he asked for a hepatitis C test, after speaking to a friend who recently been diagnosed.
“He said you’ve probably got it too because we shared needles. The doctors said there wasn’t anything they could do so don’t worry about it,” he said.
Glenn often felt judged by others when he told them he was living with hepatitis C, even from healthcare workers.
“I’ve had some bad reactions from people when I’ve had to disclose my diagnosis, but I think it’s a lack of education. When people know more, they are more understanding.” he says.
While many people do not experience symptoms with chronic hepatitis C, Glenn felt pains in his side, close to his liver. After being admitted to hospital for the pain, Glenn was told it was his “hep C playing up.”
Following this he saw his doctor after noticing he had boils, for the first time in his life. Glenn was referred to a liver clinic after the doctor discovered his liver enzymes were high.
Glenn’s initial visits to the liver clinic left him feeling devastated after being told he had liver cirrhosis. “I thought I was going to die. My wife was freaking out.”
At the clinic Glen noticed a sign for Hepatitis Queensland and rang the InfoLine for support. “It was the first time treatment was even mentioned to me.”
While the promise of a cure was appealing, Glenn found the path to treatment contained many obstacles.
“I went back to the liver clinic to discuss my options and ended up on the treatment merry-go-round,” he said.
Before the highly successfully direct-acting antiviral treatment was available, hepatitis C treatment was akin to undergoing chemotherapy. Patients experienced a multitude of side effects with many needing to put their lives on hold and take time off from work.
While initially Glenn was hopeful his employer would be supportive of his treatment needs, he eventually lost his job and struggled to secure financial support.
Glenn’s first attempt at treatment was disrupted when a gall stone blockage forced him to stop his treatment. This was followed by a promise to be part of a trial for a new medication but six months later he was told he was ineligible.
After going back to the liver specialist Glenn was underwent a gruelling 12-month Interferon program. Three months after the treatment finished Glenn’s test results showed the virus was still in his system.
Glenn was finally accepted for another trial of the new medication, known as direct-acting antivirals, which involved taking tablets for 12 weeks. “After four weeks my viral load went from six million to 4000.”
“There was no side effects and it was just tablets. Two months after the trial finished the test showed the virus couldn’t be detected,” he said.
Glenn says he now has a lot more energy though he still has issues with his liver due to the damage hepatitis C caused. “I still have cirrhosis but I don’t worry about it anymore.”
Glenn is passionate about sharing his story and hopes that others who have been cured will do that same.
“I work with a lot of our mob who may or may not have hep C. There’s still stigma out there because people don’t understand.”
“It all comes down to education. If they’re not educated they have their own opinions from the past. It used to be a fearful thing, now you can turn it around.”
“Liver health is important. Just go and get tested. If you get a positive result, there is a cure and you can beat the virus.
If you’d like to share your story, please get in touch on 07 3846 0020 or use our online contact form.