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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.
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.
More about hepatitis
World Hepatitis Day was on Sunday. Hepatitis B is a contagious virus that affects the liver. About 94,000 New Zealanders have chronic hepatitis B and 60% of these will be undiagnosed. Many of those infected don’t have any symptoms. Unmonitored, hepatitis B can cause liver damage and, eventually, cancer. Hepatitis C is the leading cause for liver transplant and affects about 30,000 New Zealanders. As with Hepatitis B, many people won’t know they have it. Visit the Hepatitis Foundation New Zealand for more information.
