What’s it like to be: Living with hepatitis

What’s It Like To Be… is a fortnightly column where New Zealanders from all walks of life share first-hand experiences. 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.