Lived experiences: stories shared
Sharing your liver health experience can raise awareness about the issues and help people with similar diseases manage their conditions. It can also help health professionals better understand liver diseases from a patient perspective.
We're always on the lookout for people willing to share their health journeys. How and where stories are shared is up to each individual. It can be done in writing, on video or via audio recording. Confidentiality is assured; names can be changed if required.
Please contact us if you're willing to share your liver health story.
Watch stories of how Kiwis have coped with hepatitis C.
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What’s it like to be: Living with hepatitis
Here, David Mahutonga talks about living with hepatitis B. It was discovered when he was 35, leading to liver cancer and ultimately a liver transplant.
I was about 35 when I found out I had hepatitis. My oldest daughter and I were living in Rotorua, and we went past this caravan that just happened to be doing hepatitis tests. She said, “Let’s go and have a try.” I got some results a couple of weeks later, telling me that I had hepatitis B.
Looking back, there were a few clues that I might have had it when I was younger. I think I had a bout when I was a kid - I remember it made me go yellow. But after that, I recovered and was back to normal, as far as I remember.
Then when I was a teenager, the blood collection people rejected my blood because of hepatitis. But there were no explanations, so I thought nothing more of it. I thought it might be a one-off and carried on. I thought I wouldn’t bother trying to donate any more blood.
When my hepatitis was finally picked up properly, the Hepatitis Foundation told me it would enrol me in its monitoring programme. I didn’t have any symptoms or illness, but I was tested every six months. It went on like that for about 20 years. Then in 2021, I was told I had some bad blood samples and I went for an MRI scan. After some more tests, a specialist told me I had cancer of the liver.
I live in Taranaki but had my first lot of chemotherapy in Auckland. I thought that went okay but the next time I went up there, the team asked me if I would entertain the thought of a liver transplant. I wasn’t really sick or anything like that though, so I quizzed them. I said, “I don’t feel that bad, so why don’t I just hold on to it for a bit to use any goodness left in it, then think about a transplant?”
But the gastroenterologist, Dr David Orr, told me liver cancer doesn’t work that way. He said without the transplant, I might be able to come and see him next year. And then the year after, there was only a 50% chance I would be alive to see him and a year after that, I definitely wouldn’t be around to see him. So a transplant was a bit of a no-brainer.
In early 2022, I went through a raft of tests that took a week. On the Friday, they sat me down to tell me I made the grade to qualify for a transplant and offered me a place on the waiting list.
On July 30, 2022, I had my operation. I went to the hospital theatre about 6am and didn’t come around until about 11pm that night.
David Mahutonga, with his mokopuna, likely had hepatitis since childhood but like many New Zealanders had no symptoms. Photo / supplied
They told me the operation had gone well. I was in hospital for seven days. Then they released me, but I had to stay in Auckland. I was in a hotel for a few weeks and then spent a further few weeks in a transplant house attached to Auckland City Hospital. All my meds were being balanced out at that stage. There were steroids and other bits and pieces, but the big thing was the anti-rejection pills.
My recovery went so well that I went back to work full time in December 2022.
Now, I have to take good care of my liver. I don’t drink alcohol and I also have diabetes, so I pretty much eat zero sugar. Occasionally, I’ll have a bit of ice cream or chocolate for a treat but it’s pretty infrequent.
Hepatitis can lie dormant and come back; it’s the disease that keeps on giving. I will always have to be monitored and be careful. I will have to take pills for the rest of my life.
But even with that, I feel great. I’m just about to retire and can’t wait. I’ve got so many things to do, like working on my house. I also do a lot of work out at the pā, at my marae. I’ve got six kids and four grandkids - the eldest is 6 years old - and I get involved in a lot of family things. I missed out on some of this stuff as I was a shift worker, so I want to make up for some of those things. I’m pretty sure I’m going to live a full life.
Not long ago, the transplant team asked me to a seminar being held in Asia. The team wanted to have someone talk who could give their story.
I was only too glad to, really, just to say thanks and to share how the foundation’s early warning system works. It was so good for me. I got sick, but not like some of the guys that I’ve met and seen.
Do you value your life?
Celina Teao does not have hepatitis B but she knows first-hand the importance of being tested and vaccinated, particularly for Pacific Islanders. As a grandmother of seven boys, she says she has watched and been actively involved in ensuring their required vaccinations are on target.
“This is so important to our Pacific Island people, as we are prone to diseases such as hepatitis B. Although there is no known cure, early detection, treatment and protection of these diseases are far greater than anything you would wish for in your lifetime and for the future generation.
“Do you value your life?”
Born in Rarotonga in the late 60s, Celina attended a Catholic school where she says health, hygiene and well-being was taught at primary age. “Education and re-enforcement of vaccinations including hepatitis B was a priority. We were given oral medication and they watched us consume it all. If you had a scar on your left upper arm, it meant you toughened the needle for immunisation. It highlighted the fact that we needed to be part of the vaccination programme to prevent illness of such diseases later in life.”
Earlier this year Celina set what she hopes will be an example to others of her culture. “In September 2020 I found out by chance that the Hepatitis Foundation of New Zealand was visiting the Pacific Island Community Tauranga Trust. So I jumped at the chance to be checked for hepatitis B. I didn’t think I had the disease, but there’s always a chance it could be lurking. So I took the test at no cost, and
it was a very easy and simple process.
For many people there are a lot of unanswered questions around hepatitis B, Celina says. “Immediately after the test, I read some materials about the disease. It made me think. What if I have it? What do I do? What about my family? Females have a higher percentage of being a carrier. Then I started to think about our people: why are we not educated about this? Why don’t we attend these free tests? Is it the time or are we just lazy? How do we encourage others to attend the initial testing process?
"Do we as a community provide enough awareness about the test, times and venues? I know the basics but there’s a lot more to learn," she says.
"I’m happy to reveal my test result came back negative for hepatitis B. I will most certainly be encouraging my immediate family and those around me to take this test."
'Hepatitis hunter' saves the day
About 38 years ago Richard* went to hospital with a rugby injury. While there he had several tests and discovered he had hepatitis B, contracted from his mother during her pregnancy. His siblings also all tested positive. They had all had the virus since birth.
With no symptoms, Richard was not in a hurry to seek advice.
Enter Helen Purcell, one of our community nurses. She met with the whole family to discuss the next steps but Richard didn't attend this meeting: he didn't think he needed to. But Helen – the hepatitis hunter, Richard calls her – ferreted him out and organised blood tests. They found Richard was the worst-affected of all his family, even though he didn’t drink or smoke and was a healthy vegetarian.Helen suggested Richard start taking medication. Since then his hepatitis status has changed drastically and he’s grateful for the support. “Helen’s contact saved me,” he says.
Others in his family, sadly, weren’t so lucky; some have lost their battle with the virus Richard calls a silent killer. “It’s very serious and should be dealt with properly. “Go straight to the Hepatitis Foundation and receive regular check-ups," he advises anyone else in a similar situation.”
Thanks to Helen’s intervention, hepatitis B has not seriously impacted Richard’s life.
He still works, still follows his passion for old American and personalised furniture art, and he can spend time with his wife, nine children, 18 grandchildren and six great-grandchildren without any issues.
“I’m very proud of the people who care for and support me,” Richard says. "Helen and the rest of the team at the Hepatitis Foundation keep me motivated. It’s important to me not to let them down.”
* Name has been changed for confidentiality reasons.
Life with COVID-19 and hep B
Life has been a struggle for Thomas* recently.
In March the 41-year-old fencing contractor caught COVID-19, thanks to contact with someone from one of New Zealand’s main clusters. He first noticed symptoms about March 19, but put them down to an existing ear infection. Within two days he was bedridden. “I lost my sense of taste, my sense of smell.”
Trips to the toilet, Thomas says, tired him out so much he could do nothing but sleep afterwards. There were headaches too, making him feel as though someone was stabbing him in the head, and a weird smell that reminded him of a hospital. He lost 14kg in 14 days and antibiotics made no difference. “I needed to lose a bit of weight but that wasn’t a healthy way to do it.”
By the time he was eventually tested on March 28 and diagnosed, he was on the road to recovery, but it was a scary time. To the people who have suggested COVID-19 is simply a bad case of flu, Thomas has this to say: it’s not. “This thing hit me pretty hard.”
Luckily, he says, no one in his household – including his young grandson - became infected.
The effects haven’t been just physical: COVID-19 has also affected Thomas’s attitude to his work. “I know I’m better but I’m hesitant to go back. I have a couple of elderly clients and I’m anxious about it. There may be symptoms, I don’t know.”
Thomas was born with hepatitis B and diagnosed in 2010. Could this have aggravated the symptoms? “Possibly,” he admits. “Everyone I’ve spoken to (who’s had COVID-19) sailed through it more easily than I did. I’ve noticed in the past few years I get sick more easily than everyone else and I put that down to hepatitis.”
Thomas’s liver condition was picked up during a regular check-up. It was, understandably, a shock. “I didn’t know much about it,” he says.
He’s since learned to manage it by having regular blood tests and eating properly. “I don’t really drink, don’t smoke. I only eat meat every few days.”
He also makes a lot of vegetable juices to boost his immune system. “I’ve always liked veges.” He stays fit, exercising at home on a treadmill, and his physical work helps. It’s a far cry from his pre-hepatitis days. “I was pretty bad back then, eating pies before work,” he chuckles down the phone.
“I was overindulging.”
Two of Thomas’s three brothers also have hepatitis B and it’s them, he says, who keep him motivated to stay healthy. “One of them is a talented musician but he can’t do any of that work now. He can’t sign his name, can’t eat with a knife and fork. He feels like an animal, and he’s a solo dad with six kids, so he drinks to cope.”
“He’s the reason I look after myself. I take extra precautions.”
It’s not an easy life. Thomas is open about that. But he tries to look on the bright side. “You’ve got to carry on. As long as you’re looking after yourself that’s all you can do. There’s not much else you can do except stay positive.”
* Name has been changed for confidentiality reasons.
Speaking out about hepatitis C
Phillip Baldwin was diagnosed with HIV and hepatitis C at 24. Now he's an activist for HIV, hepatitis and human rights issues. Story courtesy of the World Hepatitis Alliance.
I was just 24 years old when I was diagnosed with HIV and hepatitis C.
I was diagnosed with HIV during a lunch break from work, then a week later I was told I also had hepatitis C. It came as a complete shock, and this double whammy had a huge impact on my life. I felt fear, shame, grief, and anger. I had no physical symptoms of hepatitis. I had been accessing STI testing from the age of 17 and always aimed to have safe sex.
Because I was tested regularly, this meant the viruses were diagnosed early on and I was able to access treatment as soon as possible. Emotionally, though, hepatitis C had a huge impact on me and I felt the stigma of my diagnosis acutely.
Having been diagnosed with HIV and hepatitis C, I had to deal with the dual stigma of being co-infected. I felt alienated from HIV-negative men on account of my HIV, and I felt alienated from HIV-positive men on account of my hepatitis C. I didn’t know where or how to fit in. I felt isolated. I really did feel that I was alone.
The year of my diagnoses was particularly difficult. During this time, I contemplated taking my life on three occasions. What pulled me back was thinking about the impact that this would have on my family and friends. I attended support groups where I met other people living with HIV and hepatitis C. Hearing about their journeys really helped me come to terms with being HIV- and hepatitis C-positive, and I was able to gain objectivity and learn more about the viruses. This objectivity allowed me to slowly gain more acceptance around my diagnoses.
Though it took me years to come to terms with my hepatitis C, once I had achieved it, I really wanted to speak out because there is a real lack of awareness around the virus. In 2014, I started writing for the Huffpost and, in 2015, I left my job as a lawyer in London to concentrate full-time on my activism.
I’m now a gay rights and human rights activist and a writer. Ultimately, my diagnoses empowered me and I wouldn’t be the person I am today if it hadn’t been for them. I am very privileged to have the voice I do around HIV, hepatitis and human rights issues. I have magazine columns where I frequently write about hepatitis, and I discuss it on radio and on TV. I try to be as candid as possible about my own journey with hepatitis C.
We need to raise awareness around the virus and educate people. Being an activist doesn’t just mean taking part in protest marches. I would encourage anyone who has the confidence to do so to speak about their own experiences with hepatitis – personal stories and experiences are very compelling and help to break down stigma. After all, hepatitis doesn’t discriminate and people from all walks of life can have it.
I accessed treatment for hepatitis C in December 2016. I found the 12-week treatment to be free of side-effects and it was an amazing feeling when I cleared the disease. It felt like a huge weight had been lifted from my shoulders. I no longer had to worry about the potential health consequences of hepatitis C.
I think it’s important we find the many people who are living with viral hepatitis but are undiagnosed. We need to dramatically increase testing and, in my view, we need to aim to move testing beyond prisons, beyond substance misuse services, beyond sexual health clinics. It needs to become the norm that people are tested. This would help break down stigma surrounding the disease, too.
"There should be universal testing"
Ronni Marks is a fashion designer from the US. She had hepatitis C for many years but has been cured. This is her story, courtesy of the World Hepatitis Alliance.
I grew up between Connecticut and New York City. I spent a lot of my childhood in hospital because I had a hip problem. Over the years, I had many hip surgeries and blood transfusions.
I believe it was from one of those blood transfusions that I got hepatitis C.
I found out I had the virus when my mother was having a knee replacement and a friend and I went to give blood. About two weeks later, I got a letter in the mail saying they needed to see me at the hospital.
We knew nothing about hepatitis C in 1996. Back then, they did liver biopsies. Thank goodness people don’t really need to have them today.
The doctor told me to go live my life, that everything was fine and said goodbye. And I did, until about six months
later when my primary care doctor called me and told me I had a serious illness. In those days patients took interferon and ribavarin treatment, and my doctor prescribed it to me. It was a horrific, horrific experience. It made me very sick, and I didn’t get cured.
Almost 20 years later my doctor suggested I go on medication again. Within 12 weeks of starting this new medication I was cured, but it was a long journey.
I now work with under-served communities because there is such a lack of support and education about hepatitis C. I think everybody should be tested. I think we should have universal testing, not just because you are a baby-boomer. It doesn’t matter how you got it, you have it. So let’s help one another and make sure everybody gets cured.
Hope for hepatitis elimination
When I was working as an HIV-AIDS activist I met Helena. She was in a hospital, her diagnosis was HIV-hepatitis C (HCV) co-infection, and it was in a terminal stage. Nobody wanted to see her and nursing staff rarely came into her room; not even her family came. One day she asks me with her already-broken voice to call her family. She wanted to see her mother and her daughter. I called them, but the response from the other side of the telephone line was negative. I was never able to tell Helena.
One afternoon she asked me to read Psalm 23 from the Bible I had brought in at her request and, as I read it, she faded until she passed away.
Helena stayed with me. I could do a lot for her on the issue of HIV/AIDS, but I could not do anything about hepatitis C. I did not know much about it. I know that there are many Helenas dying because of misinformation, a lack of awareness and a lack of information about how to prevent infection.
I started my hepatitis activism because of Helena. I comfort myself because I’ve been able to help and empower many people by educating them on the subject of hepatitis. More than
that, I’ve been able to help them get timely medical attention, access medicines through legal action and receive comprehensive care.
There are many of us around the world doing the same work with other ‘Helenas’. Little by little, awareness of viral hepatitis is being achieved. Hepatitis B and hepatitis C will be known and spoken about all over the world. The slogan that we once had in a campaign - no more silence with the silent disease - has taken effect thanks to the efforts of many organisations, activists, patients and professionals that have sown the seeds of difference. There is now real hope that we can eliminate these diseases.
- Yary Laudith Torres Ramirez, Colombia. Story courtesy of the World Hepatitis Alliance.
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