When Yvonne donated blood for the first time at the age of 18, she didn’t realise it would also be the last time.

Following her visit to donate blood, Yvonne received a letter in the mail advising her she had chronic hepatitis B.

“That was back in the 1980s when not many people knew about hepatitis B, not even my doctor. I remember being surprised because I had no idea how I could have been infected,” she said.

Yvonne said her doctor didn’t provide her with much information other than she was a ‘healthy carrier’. She now knows this term is incorrect because it gives people a false sense of security.

“I thought I didn’t have to worry about it, at least not for a long time.”

It wasn’t until a few years after having children that Yvonne felt a strange discomfort around her liver and realised she couldn’t ignore it any longer.

“Because hepatitis B has virtually no symptoms a lot of damage can happen without people noticing. That’s why everyone who has a chronic hep B infection needs 6-monthly or yearly checkups.”

“By the time I took action, I had some liver damage, and I think this could have been prevented if I had gone to the doctor to check on it sooner.”

When Yvonne started treatment, it wasn’t long until she noticed a difference and had more energy.

“I felt so good that I remember thinking ‘so that’s what it feels like to have normal energy levels’”.

“Treatment for hepatitis B is really easy these days. It’s really only one tablet a day, the treatments are subsidised and it has practically no side effects.”

Before starting treatment, Yvonne’s tiredness had affected her ability to work, study and care for her children.

“With treatment, it became easier. I was able to support my children through school better and I liked being a role model as they could see me succeed at my studies.”

“I did a whole university degree which led to employment with Queensland Health. I started doing public speaking, telling my story, and organising educational events in migrant communities about hepatitis B.”

“My life is very normal now. I’ve gotten used to taking my tablet once a day which keeps the virus at bay. I still have my 6-monthly check-ups and blood tests at the liver clinic. Apart from that, my life is unaffected by my hepatitis B.”

Yvonne understands why people may be hesitant to speak out and tell their family and friends they have the virus.

“People are scared about the stigma surrounding hepatitis B. They worry about what other people might think and that they might be treated differently.”

“In my experience people surprise you, people are not as judgemental as you might think.”

Yvonne says she would tell a person who suspects they have hep B not to be scared.

“Seeking treatment for hepatitis B involves a blood test. It’s always better to know, don’t wait. Just go and have it done now.”

Treatment for hepatitis B

Not everyone with chronic hepatitis B will need treatment. Having regular check-ups will help your doctor to monitor the virus and advise if you need to start taking medication.

A surfing holiday in 1969 marked the start of Ted’s journey with hepatitis C, though it wasn’t until 33 years later that he would find out he had it.

Ted’s story is not uncommon. Around 80 per cent of people with chronic hepatitis C do not show any symptoms and go for many years without knowing they have a life-long virus affecting their liver.

“I didn’t believe the doctors when they first told me the results and I asked them to double-check. I was very active, going to the gym regularly, and didn’t experience any symptoms,” Ted recalls.

“I had raised a family and started my own business, which employed ten staff at the time.”

Many people who have hepatitis C are baby boomers who contracted the virus back in the 1960s and 1970s after experimenting with intravenous drugs, perhaps only once. For Ted, this came in the form of a morphine injection, which a friend offered as payment for a wetsuit.

Fast forward to 2002, when Ted was diagnosed with the hepatitis C virus and had his first of seven liver biopsies. Ted describes the pain of the biopsies as “incredible” which served as a wake-up call to learn more about his chronic condition.

It was around this time Ted became aware of Hepatitis Queensland. He attended regular support meetings as well as beginning an 11-month pegylated interform treatment program in the hopes of curing the virus.

“Hepatitis Queensland was a real liver saver, and without their input, I just don’t know how I would have managed.

“After 48 weeks of injections, my tests came back negative, but because very few people in my group had cleared the virus, I was not expecting too much, and sure enough, four weeks later, the tests revealed the hep C had returned.”

With treatment unsuccessful, Ted spent the next six years regularly monitoring his liver health with blood tests, ultrasounds and CT scans. A scan in 2009 revealed he had developed liver cancer, and a transplant was the only treatment option possible.

After undergoing months of tests and successfully pleading his case with the liver transplant team, Ted was placed on the transplant list. Three months later, he was lucky enough to receive a new liver.

While Ted no longer had liver cancer, he was still living with hepatitis C, which was always in the back of his mind. When a new, less invasive cure for hepatitis C became available in 2016, Ted began an 8-week treatment course of treatment.

“In the beginning, I was symptom-free but then fatigue set in, and I had trouble walking upstairs,” Ted recalls.

Thankfully Ted’s side effects were short-lived, with his energy quickly returning. In fact, three weeks after finishing treatment Ted took part in a 10km fun run.

“I was amazed that with only a couple of weeks of training, I managed to run the Bridge to Brisbane in my best time yet,” he said.

“If only I had a crystal ball to go back and tell people, there was a light at the end of the tunnel.”

Now cured of hepatitis C, Ted says he wants to do what he can to let others know how important it is to be tested and treated.

“The new medications offer an extremely high cure rate for hep C, so now is the time to access treatment for those who have been putting it off for a while.”

Three years ago, when Tenisha received found out she had autoimmune hepatitis, the news came as a massive shock.

“I had always been very fit and active. I worked in the police force for 15 years, and I’ve also spent a lot of time working with horses,” Tenisha said.

Autoimmune hepatitis is when your body’s immune system attacks your cells, causing liver inflammation and damage. People often experience little to no symptoms, and it is more likely to occur in women than men.

While Tenisha suspects she has had the condition for a long time, it wasn’t diagnosed until she showed severe symptoms.

“I had to be hospitalised because I was vomiting blood from burst varices (enlarged blood vessels). Initially, I was very upset; I thought I was going to die.”

Varices can develop when normal blood flow to the liver is blocked, most often by scar tissue caused by liver disease. The blood then flows into smaller blood vessels that struggle to carry larger amounts of blood.

Autoimmune hepatitis impacted Tenisha’s energy levels to the point where she couldn’t get out of bed and had to stop riding horses.

“I went back to the doctor for blood tests and found I was very low in iron. The day I was booked in to have an iron infusion, they said my levels were so low I needed to go to the hospital for a blood transfusion instead.”

Tenisha’s doctors have since told her she is at the starting stage of cirrhosis, where the liver is scarred and permanently damaged.

“I’ve been referred to a liver clinic as I may need a liver transplant at some point. Once you hit cirrhosis you can’t repair or fix it, it’s too late.”

To treat her condition, Tenisha regularly takes immune suppressants and blood pressure tablets and sees a specialist for monthly check-ups.

“I’m tired a lot and sleep for a lot of the day. I’m slowing weaning myself off that.”

“I did a lot of research into what I should and shouldn’t be eating and I’m trying to be more mindful of what I eat.”

“If I had known about these types of diseases earlier on, I may have been able to do something sooner and not be in the position I am in now.”

Autoimmune hepatitis is a rare condition with the exact cause still unknown. What is known is that one in four Queenslanders are living with various types of liver disease, with the majority of these being fatty liver.

Tenisha’s advice to others is to be proactive in looking after their liver.

“If you have concerns about your liver, change your diet, exercise, reduce your alcohol and you will be ok. Once you hit my stage it’s too late. You can’t survive without your liver.”

“I should have another 40 years of life. There’s a chance I may not have that. If you have the opportunity, take it seriously, change your life.”