Kin lives in Sydney with his wife and three children. He has written here about his life lived with hepatitis B, the effect it had on his liver, and how continual monitoring saved him from a potentially devastating health outcome.
You can also read this story in Chinese, as originally written – 我的乙肝故事 >>> CLICK HERE
This story won First Place/ Chinese/ Lived Experience in our 2021 Hep B Chinese and Korean Writing Competition. Congratulations, Kin!
When I was born in China, in the early 1980s, there was no requirement to vaccinate newborns against hepatitis B. My parents learned that I had the hepatitis B virus during a routine test to enrol in a primary school, and later found out that my father also had hepatitis B. Since, in those days, there was no vaccine it meant that many children got hepatitis B from their parents and it remained undetected until they were given a blood test at an older age.
Monitoring my hepatitis B
My parents paid great attention to my health. When they learnt that I had hepatitis B, they immediately consulted with doctors for more information. Over 30 years ago, technology was not as developed as it is now, so information on where to find a good doctor was often passed through word of mouth. We visited many doctors, both traditional Chinese medicine and western medicine. My father blamed himself for not protecting me. During those days of seeking medical care, he would accompany me, taking medication with me together every day. Sometimes he would go by himself to the hospital for treatments, such as an IV drip.
My father had a firm belief that, if we persisted and were optimistic, the hepatitis B test results would turn negative. Yes, indeed there was a time when we both had our surface antigen test return as negative. However, just when we thought we had defeated the virus, it came back again. I was told that I still had hepatitis B during my routine test for entering second school, and my father was later found to still have it too. We were informed by a doctor that this was common among chronic hepatitis B patients. Since there were no drugs to cure us, we needed regular monitoring. That way, if anything out of the ordinary was found, we could then start treatment to reduce any likelihood of damage to our livers. From that point on, my father gave up the thought that our hepatitis B could be cured.
Hepatitis B almost derailed my studies
Over many years, except for the red elevating marks on our lab reports, it seemed to be having no effect on us. Because of this, my father did not pay much attention to the regular monitoring by the doctor. Then, a month before my college entrance examination, they found major changes in my condition. I was told that my status was what they called “big three positive” (HBeAg positive).
This meant, so the doctor told me, that the virus was actively replicating and I had a high viral load. In my day, study was so important that it could truly change one’s fate. Now at such an important time in my life, I felt plagued by this virus and it would be wrong to say that I did not feel devastated. However, my father’s perseverance again gave me great support and encouragement.
He said to me, “Son, you do not need to worry about anything. Concentrate on the exam, follow the doctor’s treatment plan for medication. It’s okay if you’ve done your best”.
I listened to his words, and indeed things seemed to go in the right direction. A check-up before the exam showed that I was back to “small three positive” status (from HBeAg positive to HBeAb positive), which suggested my viral load was lower. I achieved an excellent result in my exam, ranked in the top five in my school, and got into my preferred university.
Despite hepatitis B, my life became like a gentle brook
From there, my life followed a path taken by so many others. After completing my undergraduate and postgraduate degrees, I got into a software technology company and was travelling around China to various companies as an accounting software consultant. It was busy, particularly around the end of each month, and overworking was common. Despite this, I remained aware of my condition and knew I could not afford to ignore it. I never missed my six-monthly check-ups, ate regularly, and got plenty of rest. Everything was going well.
At the end of 2010, I met my current partner who, while settled in Australia, had returned to China to visit relatives. Through “matchmaking”, we got to know each other and soon got married. At the end of 2014, I finished my employment contract with the company in China and decided not to renew it. Instead, I moved to Australia to settle down with my wife.
After the birth of our third child, my employment became stable and I no longer needed to work overtime – our life became easy and comfortable. I had thought my life would be like a brook, trickling slowly into one long river of happiness. However, some unexpected news hit us hard.
Unexpected liver complications
Following a hepatitis B check-up at the end of 2019, the clinic urgently informed me that my AFP level (Alpha-Fetoprotein – for potential tumour markers) was out of the normal range. I also was contacted by a hepatologist from Westmead Hospital, who arranged for me to have an abdominal CT scan. I was puzzled and didn’t know how to react to this news – a check-up half year earlier showed everything was normal. The had told me that my hepatitis B surface antigen had “turned negative” – HBV-DNA not detected. So, I was very shocked to hear of this new development.
I started searching online for information about AFP, as a tumour marker – particularly for chronic hepatitis B patients – high levels could be signs of liver cancer. I felt panicked and had to force myself to calm down, it was such a short time to go from being told the hepatitis B was not detected in my blood to the possibility of having a tumour. I told my wife the news, she was also confused but told me to follow the doctor’s advice.
When the CT scan report came back and showed that everything was normal, my wife was relieved and thought maybe the doctor was making a fuss over a minor issue. After all, there were many reasons to cause the elevation of AFP, not necessarily liver cancer. However, I was still worried.
Was it liver cancer, or not?
From that point, I was scheduled for blood tests every two weeks – one month later the specialist ordered an MRI. My blood tests had continually indicated an ongoing elevation of my AFP levels, even sometimes doubling.
I was restless and became more silent and withdrawn. My wife did not understand, and we even argued over this. She thought that I was totally preoccupied with the matter and was not sharing the responsibility of looking after our kids. After our fight, I came to realise that I should carry on with my life regardless of any potential illness, and that I should take more responsibilities while I could.
Then the MRI report came back and showed a suspected tumour. My wife became worried and felt bad for being harsh on me. However, for me, it was a relief. I comforted my wife by saying it was better that we knew, so we could do something about it. I waited two weeks for the specialist to see me – he was having consultations with other specialists to develop a treatment plan. He told me that they were confident that there were cancer cells in my liver. However, the good news was that it had been found early, the tumour was in an accessible location and could be surgically removed.
Since it was almost Christmas, the operation was scheduled after the new year. Obviously, there were risks for operations. Liver resection is a challenge for surgeons, requiring sophisticated skills and, for patients like me, there was a risk of heavy bleeding. But, after the meeting with my specialist, I was confident in his expertise and skills and became relaxed.
My liver surgery
Although the operation took three more hours longer than expected, it was successful. The extra time was due to the rechecking and re-examining of my liver to make sure the tumour was completely removed.
I would like to express my sincere gratitude to not only the chief surgeon, Dr Yuen, for his precision and care, but also to the team of hepatologists led by Professor Jacob George at Westmead Hospital. They indeed gave me another life. I stayed in the hospital for observation for five days after the surgery. I was taken good care of by the doctors and nurses during those days. Even though my wife was busy looking after the family, she would still take time every day to see me. When I saw her taking our one-year-old daughter in and out every day, I told myself that I should take care of my health, so that I can look after my family well.
My colleagues came to visit me during my rehabilitative days at home after they learnt about my condition. All this support and care made me feel like Australia is a place full of love and dignity.
Future life plans
Every three months now, I take a blood test and MRI to monitor my liver. I gradually regained my strength and recovered back to how I was before. Life gives me challenges but also offers me blessings. Now for the rest of my life, I will cherish every day, every moment with my family and friends.
Published 8 November, 2021
Kin adds: “I’m glad to have had this chance to help to bring more awareness of hepatitis B to people. It is indeed an honour and good luck to win the first prize.”