Write to Be Heard: Hepatitis B Stories from the Chinese and Korean Communities by HepatitisNSW

s e i r to and S B e s i s t i e t a Chin ities p e H the un m from an Com e r o K

E T I R W E B TO D R A E H

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TO READ OUR KOREAN STORIES IN KOREAN, CLICK HERE >>

This booklet does not aim to replace the advice provided by a doctor or health care worker. If you have hepatitis B (also called hep B), please talk with a doctor about your treatment options.

Hepatitis NSW English website: www.hep.org.au Hepatitis NSW Chinese and Korean website: www.hepb.org.au MHAHS website: www.mhahs.org.au Hep B Community website: HepBCommunity.org

Published – July 2022 ISBN: 978-0-9585318-5-6 Produced by Hepatitis NSW. Contact info@hep.org.au Chinese editing and translation to English by: Shan Tao Korean editing and translation to English by: Stephanie Seo and Mina Kim English editing by: Grace Crowley Layout/design by Rhea Shortus

This work is copyright. It may be reproduced in whole or in part for study training purposes subject to the inclusion of an acknowledgment of the source and no commercial usage or sale of content or imagery. Hepatitis NSW would like to acknowledge and show respect for the Gadigal people as the traditional custodians of the land on which this booklet is published. We extend that acknowledgement and respect to all Aboriginal and Torres Strait Islander people. ABN 30 408 095 245 A non-profit health promotion charity funded by the NSW Ministry of Health. Accredited by the Quality Improvement Council of Australia (QIC). Donations of $2 and over tax deductible.

Contents English FOREWORD – Dr Alice Lee

PREFACE – Mina Kim

CHINESE LIVED EXPERIENCE STORIES EVEN A GENTLE BROOK CAN HIT ROCKS – Kin

MY UNLIKELY COMPANION – Lyn

AN INVISIBLE PAIN ALWAYS EXISTS – April

CHINESE ACQUAINTANCES STORIES MY BROTHER DIED OF LIVER CANCER, AGED 42 – Shaoyiyan

WHEN MY BROTHER-IN-LAW WAS FIRST DIAGNOSED… – Cathy

KOREAN LIVED EXPERIENCE STORIES MY SECRET STORY – Ji Young Moon

MY WORK, MY LIVER – Soonie Lee

PROTECTING MY DAUGHTER FROM HEP B – Viola

KOREAN ACQUAINTANCES STORIES MY SISTER… ISOLATED FOR NO REASON – Jin Ahn

HOW I GOT TO KNOW – Jang Soo Kim

STORY OF MY LIVER DONATION – Brian Seo

KOREAN PARTICIPATION AWARD MY FRIEND LIVED LIFE TO THE FULL – Jane Kim

Celebrating Courage FOREWORD BY DR ALICE LEE

Hepatitis B affects over 250 million people throughout the world. Higher rates of hepatitis B are well reported in some communities where it continues to cause much suffering, both physically and emotionally. Much of this can be prevented with awareness, support and encouragement. Many remain unaware of their status, and hence have not accessed care. Whilst others who are aware of their status, may be unaware of the need for constant monitoring. Treatment of course is available but barriers to treatment remain. These may be real or perceived, with misleading perceptions about treatment limitations, side effects and costs. Some people remain fearful about the social implications of sharing their diagnosis and about stigma This fear prevents some people from accessing care, often with fatal consequences. Sharing personal stories amongst a community that aspires to a similar goal - that is, to improve the life of each and every person affected by hepatitis B, as well as their families - is one of the many steps in breaking down these barriers. We are grateful to those who are brave enough to share their journey, congratulate their courage and wish you all good health.

Alice Unah Lee Gastroenterologist and Hepatologist Clinical Professor Macquarie University, University of Sydney. Senior Staff Specialist. Concord Repatriation General Hospital Director, Hepatitis B Free https://hepatitisbfree.org.au/ 1

Writing to be heard, writing to be seen PREFACE BY MINA KIM

There is a traditional fairy tale in Korea. The story is about a woman named Shim Chung who sacrificed herself for her blind father and became a queen after being saved. She invited blind men from all over the country to a big feast because there was no way to find her blind father. The queen eventually meets her father, and he finally opens his eyes with joy. How are we going to find all the people with hepatitis B? We are sometimes finding them when they suddenly suffer from serious disease like liver cancer after living with hep B, but without paying it any attention, due to not having symptoms. The most important thing is reminding people of monitoring and getting treated if needed in advance. Will we be able to find the lost hep B patients in NSW? These questions led Hepatitis NSW to start The Hep B Writing Competition. When the whole country went into lockdown due to COVID in 2021, we ran advertisements saying ‘We are listening to people with hep B in the Chinese and Korean speaking population’. Hepatitis NSW then set up a writing competition. The first entry category was for people who have hep B, and the second was for a family member or friend who knew the person’s story well. At first, we thought it would be okay for only one or two people to see our advertisement and write a story. Because it was the COVID era, we couldn’t do face-to-face programs, and we couldn’t go out to meet people and talk about the risks of hepatitis B, so we hoped this would help. We hoped that even if the number of people who participated was not big, the advertisement itself would be health promotion and remind those who have hep B but have forgotten to take care of their health, to take action. As a result, we received 12 stories. The true stories of people with hepatitis B living in Australia now. Their own story, of hard times. Their family story, of long and never-ending regular check-ups and the difference between Australia and their home country. And the story of hepatitis B from friends and relatives, which is how they got to know more about this disease. You can read the stories and appreciate how each of these participants got hep B in different situations in China and Korea, overcame the obstacles it presented, came to Australia, and received different kinds of care here. For you, the readers, from your own position, we hope you will learn something from these stories, find out more about what to do, and work together to support people living with hepatitis B. Until the day hep B disappears from the earth. 2

Even a gentle brook can hit rocks FIRST PRIZE WINNER | CHINESE | LIVED EXPERIENCE – KIN

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.

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 secondary 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. They 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.

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.”

My unlikely companion SECOND PRIZE WINNER | CHINESE | LIVED EXPERIENCE - LYN

From an early age I had known that the hepatitis B virus was in my body. However, despite my parents telling me I had hepatitis B, they didn’t give me any more information about it. This led me to experience both fear and stigma. As a child, I was very afraid that having hepatitis B meant I wouldn’t live for long. When I told a school friend – in secret – that I had the virus, much to my surprise the whole class soon knew about it. People began keeping their distance from me, and I was excluded from activities, treated as if I had a plague. This was how I spent my childhood – afraid, alone and lonely – which shaped who I am now as a reserved and withdrawn person.

One of the few companions I did have in my childhood, however, was the daily dose of an unpalatable decoction of traditional Chinese herbs, and some Western medicine pills. Because of my lengthy history of taking traditional medication, I always felt I carried around the odour of those herbal brews with me. I don’t know how long I had been taking the Western medication, but after one particular health check-up, my parents stopped me from taking it. Unlike how I imagined as a child – believing I would not live past age 18 – I seemingly grew up healthy. I applied for the college entrance examination, just like anyone else, and had no limits placed on my college application. In those days, regular health check-ups did not include serology tests for hepatitis B, only liver function tests with further tests ordered if that result was abnormal. As long as I had a normal liver function no one really knew I had hepatitis B and, as such, I passed my school entry and pre-employment health exams. I had worried that hepatitis B would be a barrier to me starting an intimate relationship. It was not easy deciding when to tell partners about my status. If I was honest with them about my condition; I was afraid they might reject me. If I didn’t tell; I feared that I might pass the virus on to them. Fortunately, maybe because of my low viral load, I did not give hepatitis B to any of my partners. One partner broke up with me, saying he preferred a “normal” person and that he believed my hepatitis B might infect “our future children”. I was hurt and outraged! I knew there 8

were effective ways to prevent mother-to-child transmission, so this was a groundless accusation. Eventually, I realised what he had said was not love, because love is acceptance and inclusiveness.   In terms of diet, I don’t like greasy or salty food. Possibly this has allowed my liver to remain in good condition. All my health checks continued to show normal liver function. After coming to Australia, my doctor told me that I need to have regular liver monitoring. So far, every check-up looks good, my viral load remains low. I deeply appreciate my doctor for his care and support. Hepatitis B is a companion… but one that I hardly notice.

An invisible pain always exists THIRD PRIZE WINNER | CHINESE | LIVED EXPERIENCE - APRIL

If you search online for “中国的乙肝” (“hepatitis B in China”), the staggering number of “120 million people living with hepatitis B”* will appear. And that number definitely includes me. I came to know of hepatitis B when I was in high school, through a health check for a college entrance examination. Since then, it has affected my life.

Upon graduation from university, I had a job interview with China Mobile. After the first round of interviews, they learnt of my hepatitis B and told me I could not go ahead with the recruitment process. I was so sad about the way this job opportunity was taken from me. My dad bought me Western medicine from a pharmacy – he said it could “treat my hepatitis B”. Once the treatment started, I had to continue for several courses. Of course, in the end, it did not work. After joining the workforce, I heard some news that a hospital had a way to effectively treat hepatitis B. It was a method that first drew the blood and mixed it with oxygen, then pumped back into the body. In addition, there was a machine which used bands to wrap around the liver, and used the vibration generated by the machine to treat the liver. At that time, I was in a “hepatitis B e-antigen (HBeAg) positive” phase and my viral load was high. I received the treatment once or twice a week and, after a year or so, my viral load had decreased but was still in the HBeAg- positive phase. Eventually, I had to stop as the treatment was too costly. When I was 28, the prime age for marriage, I was not able to let go of the traumatic experiences I had experienced because of hepatitis B. I also believed that I could not have children, and even if I did, I could infect them. This was a major reason for my fear of getting married. It was not until I was 30 that I had a good understanding of hepatitis B, and perhaps it is fate that brought my partner and I together, we got married that year. Soon after I had my first child. I had breastfed her but immediately stopped when I found my nipples had cracked, because I knew that hepatitis B was transmitted through blood. 10

One year later, my second child was born. When he was two years old, I took him and his sister for a check-up. The results showed that they were protected against hepatitis B, it was the biggest joy for me. * HBsAg positive numbers from a Chinese National Sero-epidemiological Survey, 1992

April adds: “I hope to tell you through my experience that people with hepatitis B can get married and have children, and that you do not have to miss out on love and happiness.”

My brother died of liver cancer, aged 42 FIRST PRIZE WINNER | CHINESE | ACQUAINTANCES - SHAOYIYAN

At 15:10pm, November 11, 2018, my brother left this world because of liver cancer. He was 42. It was a day my family and I would always remember. The loss of my loved one made me think that 42 was such a wonderful age, young, strong, able to do many things. Meanwhile, life is too fragile and short.

My brother was born in a village with a traditional mindset. If he could tolerate the pain, he would never see a doctor. Perhaps he thought that he was healthy, he took cold showers all year around. He would go swimming in rivers in winter. He even built a gym at home for fitness in the first half of the year. But he smoked and drank over the years, and often came back drunk from business parties and networking. While he was working hard to earn a good life, his only daughter grew up lacking parental care. Then she lost his companionship. My sister and I lost our dear brother whom we grew up with together, my old and infirm parents lost their beloved son. It is hard to describe the deep feelings we shared, and nothing can replace him. From the time when my brother found out he had hepatitis B, to the commencement of his treatment and then being told that his infection was advanced, all happened in less than three months. We discovered this from the medical reports he had left at home. He visited doctors in different hospitals four times. The first two did not make the right diagnosis, and therefore missed the best time for treatment. The first report from the village hospital stated “gastritis”, and the second report from the town hospital diagnosed “diabetes”, which obviously did not improve after he took their prescribed medication for a long time. When my brother went to the provincial hospital, the report showed “advanced liver cancer and hepatitis B infection”. My family speculated he might have contracted hepatitis B from his girlfriend, and his then years of heavy drinking for business led to the fast progress of his liver cancer.

My niece

My brother’s liver cancer turned him from a big strong man into a thin, old looking person – coughing, with shallow breathing. He had tired, yellow and vacant eyes, dry and dull skin, with scrawny upper body and a bulging belly. Both his feet were swollen like those of elephants. He sometimes felt itching on his skin and his bodily fluid, containing blood, would excrete from the skin. His blood clotting ability was no longer working. Whatever he ate he would vomit back up, including little pills. He produced no urine or stool. All the medical liquid that was given to him went to his abdomen, turned into bloody fluid, and was then medically drained. Every night, he could not sleep because of the pain. 13

Knowing that he was in the advanced stage, he felt depressed. He was mostly in pain but pretended to be okay when he had visitors. During hospitalisation, he needed to remain in bed – he was ventilated, the fluid from his ascites was drained, and he had to take painkillers to maintain his life. Every hospital we stayed at talked us into giving up and leaving, because my brother was terminally ill and there was “no point in staying”. We were told there were many patients waiting for the bed and so, if we did not leave, others could not get in. His hepatitis B could often also incur discrimination from some healthcare workers. He could not endure that. My family understood all of these issues, but we worried that if my brother returned home, there was no medical equipment, which meant that he would die at any time. We could not bear to let him go but we had no option except to follow the hospital’s directives. My brother had a strong will to live, no matter how much pain he suffered, he took it all in. When he was back home, he did not want to bother others with the pain. He would get out of bed, but often fell over as his legs did not have enough strength to allow him to stand. The first night when he was home - without the support of medical equipment - he was soon in a critical condition, we called the ambulance. The doctor who was looking after my brother was newly graduated, but very responsible – she tried every possible way to save him, but it was still too late. By the next day, in the afternoon, with his cancer spread all over his body, he was gone. I wish for you to rest in peace, my brother.

Shaoyiyan adds: “Through the story of my brother, I want to tell people to please look after your health, develop healthy lifestyles, see your doctor if you don’t feel well. Cherish every moment with your family.”

When my brother-in-law was first diagnosed… SECOND PRIZE WINNER | CHINESE | ACQUAINTANCES - KATHY

Four years ago, my family had hepatitis B enter our lives. My son was ten months old at the time. Since I was working, I asked my motherin-law to come over and to help look after him. Everything was going well and according to schedule. However, one night, a phone call broke the peace and rhythm of our life. My brother-in-law phoned and told us that he had hepatitis B - he needed to start treatment and it might take a while. Also, he had to stop his heavy labour construction work.

My mother-in-law lived with him in another suburb in Sydney, but it was quite far away. She was sad when she heard the news and became indecisive as to whether to stay and continue to look after her grandson or go back to care for her own son. As my husband and my jobs were hard-earned, if we gave up them, we didn’t know what the future would be like for us. We finally decided to have my brother-in-law come over to live with us. However, after he first arrived, whenever I saw him, all I could think about was the hepatitis B virus. I was really concerned and felt I was left with no other choice but to keep my family safe. I separated all our daily essentials from those used by my brother-in-law. I also firmly told him that his cutlery must be put back in his designated place and disinfected with boiling water after use. I told him not to touch anything in the house. He followed all of these orders without question. But my brother-in-law also liked to play with my son when he had free time. This made me panic stricken as I feared that my son would get infected. Whenever I came back from work and saw my brother-in-law playing with my son, I was very unhappy. I told him to wait until he recovered. Because of my behaviour, my brother-in-law would often retreat to his room when he saw me coming home. My husband, mother-in-law, and I went to see our doctor about hepatitis B. The doctor ordered tests for us all and the results showed that we had no immunity for hepatitis B. We all booked three hepatitis B vaccine shots each which we would complete across six months. 15

Even with the vaccines, I was still very cautious about living with my brother-in-law. I was afraid that one day that we might still get infected. I was stressed and unintentionally showed my emotions at my workplace. My colleague sensed something was wrong and asked me what had happened. Once he knew what was bothering me, he referred me to a community centre with a social worker who helped to answer all my concerns. From there, I then understood the true routes of transmission of hepatitis B and ways to prevent it. The most exciting thing was that there was a hepatitis B awareness event held by Hepatitis NSW happening right in my community. Without hesitancy, my husband and I took my mother-in-law to the event. Through the event, we came to learn that the hepatitis B virus can only be transmitted through mother-to-baby, blood-to-blood, and unprotected sex. It cannot be passed on by food and water. We felt utterly relieved. We also understood that we cannot get hepatitis B by sharing utensils or having meals together, nor through hugging, kissing, breast feeding, sneezing, or coughing. Ever since then, I completely overcame my stress and changed my attitude towards my brother-in-law. We happily lived together for another six months. During that time, he followed his doctor’s advice on diet, quitting alcohol and getting good rest. When he had his liver tests again, everything was back to normal. What is even more delightful, is that my son is now having lots of fun with his uncle!

My Secret Story FIRST PRIZE WINNER | KOREAN | LIVED EXPERIENCE - JI YOUNG MOON

My mother lived with hepatitis B, and I was infected during birth. Possibly there was no hepatitis B vaccination available for newborns in Korea around the time I was born or, if it was, my mother was unaware of it.

The first time I heard of ‘hepatitis B’ was as a high school student in Korea while in the process of becoming a blood donor. All my friends and I had gone to the blood donation centre and had our blood taken, but a few days later I received a letter with a blood test result that indicated my blood was unfit to donate. When I asked my mother to explain she told me, for the first time, that she had been infected with hepatitis B when my grandmother gave birth to her – the same way I got it, in turn, from her. From that point onwards I never tried to donate my blood again, however I also didn’t undergo any special medical assessments or treatments related to my hepatitis either. I spent many years like this, simply forgetting. In 2007, I came to Australia, and began preparing to apply for permanent residency so I could continue living here. In 2011, with all preparations completed and documents submitted, I was approaching one of the last stages – the physical examination. I completed various tests and, in a questionnaire where I had to indicate medical conditions that applied to me, I saw “hepatitis B”. Suddenly, I was equally curious and worried that this might affect me, although I still informed the person in charge that I probably had hepatitis B. You might say that it was from that point I began my hepatitis B treatments in Australia! I say all this lightly now but, to be honest, I had a very hard time of it. Upon learning of my hep B status, the Immigration Office placed additional requirements atop my physical examination – and so the process for gaining my permanent residency increased. I was asked to submit a thorough blood test and ultrasound result and required to seek a doctor’s opinion about my liver condition.

As a consequence, I went to St. Vincent’s Hospital to see a gastroenterologist and have a blood test and an ultrasound. At the time, I was 25, never drank alcohol or smoked, and didn’t have any other medical conditions. My results indicated that my viral load was low and there were no issues with my liver function. With the doctor’s evaluation that these good results meant there was no reason for me to have a disadvantage in my application, everything was approved, and I gained permanent Australian residency. However, the doctor also advised me to take a blood test every six months with an annual ultrasound. I received the blood tests and ultrasounds from a regular GP and saw a specialist at a Liver Clinic for the once-a-year check-up. Over time, my viral load began increasing gradually, and in 2016 it skyrocketed, at which point my doctor recommended I take Viread. Thankfully, all these treatment and prevention processes, and my medication, were covered by Medicare, so I had no reason for any hesitancy. After a few months of taking the medication I had another blood test, and thankfully, my viral load had returned to healthy levels. Even so, my doctor stressed that I must continue to have regular blood tests, as it is impossible to predict when or how my viral load could change. In 2017, since I had moved to another address, I began attending a Liver Clinic in Liverpool. Through consultations with the doctor there, I learned that taking Viread would have no – or very little – effect, on pregnancy and childbirth. While continuing to take my medication daily, I became pregnant with my first child. The doctor also urged me to ensure my child received the hepatitis B immunoglobulin vaccine after birth to prevent them from getting the virus. Thankfully, I gave birth without any problems, and my child was vaccinated with the help of a midwife. Because I gave birth at the same hospital as my regular liver clinic, they were able to keep a close eye on me. When my child was around nine months old, a blood test was done to check if they had gained immunity against hepatitis B, and thankfully, they were not infected. After the experience gained through my pregnancy, I knew it was safe to continue my medication while carrying my second child. Currently we are in the fourth month of breastfeeding, we’re both doing fine with no issues. I continue to take regular blood tests and have counselling at the Liverpool Liver Clinic – my viral load and liver health are both good. 18

Beyond my immediate family and my very close friends, people aren’t aware that I take medication for my hepatitis B. Since hepatitis B is not generally viewed in a positive light, I don’t tend to tell people. Luckily, since I don’t have any issues with my liver health, I haven’t experienced any discrimination or discomfort. However, the need to swallow a pill every day for the rest of my life, and the responsibility of having to pay more attention to my health than others – including avoiding alcohol and smoking – can be daunting. But I can endure this much to live a long, healthy life. The reason I’ve been able to live my life thus far, without any issues with my liver, is surely due to the consultations and checkups I’ve had for over ten years. I don’t know what kind of system is in place in Korea, but I think hepatitis B patients in Australia are taken very good care of, and for that I believe I’m truly fortunate.

Ji Young adds: “I am a 36-year-old woman living in Sydney who currently takes Viread for hepatitis B. I am writing this in the hope that my experiences will be able to help someone else. Thank you.”

My Work, My Liver SECOND PRIZE WINNER | KOREAN | LIVED EXPERIENCE - SOONIE LEE

Soonie at work in Korea

I was born in Seoul and lived there for 37 years before immigrating to Australia; I have now lived here for 28 years. For half my life I lived without knowing I had hepatitis B, and that discovery happened by chance.

I was diagnosed with hepatitis B during the first of regular medical examinations introduced by the company I worked for. At the time I was 33 years old, working for the branch of an overseas company in Seoul. While my ALT result (a blood test that checks for liver damage) was not very high, it was not normal either. However, nobody, including myself, took it seriously because working hard – rather than taking care of our own health – was a norm of society. I did, however, continue to have annual check-ups. When I got married two years later and talked about having a child, my husband said he didn’t want a child due to my hepatitis B condition. His reasoning stemmed from the incorrect belief that a baby would catch the virus from me and would not be healthy. 20

While I was already aware, through my doctor, of issues around pregnancy and hepatitis B, my husband did not have the same knowledge. So, we visited the doctor together, and were told that I could still have healthy children and give birth with no problem. While the doctor also said it would be better to rest from work, if possible, I didn’t want to lose my job so continued to work while pregnant. My child was healthy and was vaccinated at birth. Even so, I did not hear more details from the doctor about hepatitis B and was not advised to continue monitoring; so, monitoring my hepatitis was only done through the annual medical check-ups at work. At this time, many people were reluctant to eat alongside people with hepatitis B, so I didn’t even tell them that I was living with it. There was no detailed information on hepatitis B, and people believed the superstition that hep B transmission could happen from mouth-to-mouth. Back then, the Internet was not as widespread and medicine was not as developed, so there was a lack of guidance and guidelines around hepatitis B. When my child was 18 months old, we migrated to Australia, where my husband applied for residency in advance. During our early days of settling into Australia, I heard of a friend from Korea in his early 40s dying of cirrhosis and liver cancer due to hepatitis B. At that time, many people in Korea died from cancer, and there was little hepatitis B information or treatment. My mother had not learned she had hepatitis B until adulthood and then left it unmonitored for a long time. She died with liver cancer and cirrhosis five years after I left Korea. She was 67 years old. My brother and I had both acquired hepatitis B from her. Even during my early life in Australia, my attitude toward hepatitis B did not change much. However, due to my mother’s death – and remembering her life – I realised my health was important not only to myself, but also to my family. The liver is a difficult organ to detect abnormality in and receive early treatment for, just as my mother could not. There were no obvious symptoms even when her liver worsened. I began working at a medical clinic and so was closer to taking care of my own health. By talking about my concerns – around hepatitis and my family – with a family doctor, I was referred to a specialist. Initially, 23-years ago, my liver had cirrhosis symptoms, so I had a liver biopsy. The specialist started continuous monitoring of my liver health through regular tests and examinations. They also prescribed medication for me. Monitoring has since been conducted with regular blood tests and CT scans. The medication has changed from time-to-time, with the specialist’s guidance. I have been living well so far. 21

Since I started living in Australia, I can live a normal life while monitoring my hepatitis B. Life in Korea was always focused on work, and it was not easy to also take care of one’s health. Drinking parties with colleagues and others were an essential feature, with the amount of alcohol consumed, and the frequency, not insignificant. My family-oriented life in Australia allowed me to focus on eating healthy, home-cooked meals; and I now rarely drink alcohol. With regular tests and monitoring, I have watched my health and also paid attention to my diet. With daily medicines and frequent exercise, my liver is well maintained and has normal function. If questions arise, my specialist gives me good advice and guidance, which I have followed. I am living safer and more peaceful than ever. With the government health department’s interest and the constant help of a specialist, I am deeply grateful.

Protecting My Daughter From Hep B THIRD PRIZE WINNER | KOREAN | LIVED EXPERIENCE - VIOLA

I got my hepatitis B at birth, from my mother. My childhood and adolescence was spent no differently than others and, even up until my time at university, I lived my life day-to-day with few problems.

However, as I entered the workforce, I learned – through physical examinations for large corporations, public enterprises, etc – that people with hepatitis B were disadvantaged in getting hired. This is when I first realised the presence of discrimination. I felt I could not even try to seek employment at such corporations. While I was aware that one in ten Korean people had hepatitis B, and that there were many patients in Asia, that was the extent of my knowledge. Since I was one of many, I didn’t pay much attention to my liver health. Just as one doesn’t visit the doctor unless you are sick, the hospital was not a place I was very familiar with. At one point, maybe because of work and stress, I felt very fatigued. As I began spending more and more time over the weekend laying down, I decided to visit a doctor. Heeding the doctor’s advice to take antiviral medication, I have been taking Viread for about five years since then. I’ve also been regularly seeing my doctor and checking my liver health once every six months using an ultrasound, which gives me reassurance, and is also beneficial from a health perspective as it provides incentive for me to maintain my liver health. Two years ago, after getting married and moving to Australia, I again experienced discrimination. Even though hepatitis B is not a severe disease, I felt confused about how difficult it was for me to obtain a visa in Australia, unlike other developed countries. In the end my visa was granted, and I’ve been maintaining my health by seeing a specialist and getting regular ultrasounds. My main concerns as a hepatitis B patient were: Can I continue taking Viread while I am pregnant? If I have a child, will I transmit the disease? Would breastfeeding be possible?

But my doctor assured me that I could continue taking Viread through pregnancy, so I did, and I was even able to breastfeed after childbirth. My baby was vaccinated three times and a blood test showed that they did not have hepatitis B, so my husband and I could let out a sigh of relief. Even though it doesn’t have a major impact on my daily life, I still didn’t want to give hepatitis B to my child. It is said the liver is “the organ of silence”. It’s important to take care of it on a regular basis, but it isn’t easy. I am quite grateful that, because of my hepatitis B, I can regularly monitor and maintain my liver health. I hope that in your everyday life, you take simple steps such as regular check-ups, reducing stress, consistent meals, light exercise, and avoiding alcohol to protect both your liver health and your loved ones.

Viola and her 3 year old daughter

My Sister… Isolated for no Reason FIRST PRIZE WINNER | KOREAN | ACQUAINTANCES - JIN AHN

Jin Ahn at the Australian beach

I am one of six siblings. Three boys and three girls. As a late arrival to my family, my second eldest sister – the fifth eldest child and closest to me in age – is six years my senior. Meanwhile, my eldest brother is twenty years older than me!

My eldest brother was significantly influential inside and outside of the house, and my siblings and I were more scared of him than our father. He could control us easily with a single lift of his finger. Furthermore, in the name of training us physically and mentally, my eldest brother would wake us up even before the sun rose and gather us together in the front yard. There we would do crawling, jumping, and skipping drills – with punishments involved. This hardship continued until he was married, but I was able to avoid some of it as I was only young at the time. The people who were most affected were my youngest brother, and my second eldest sister. 25

At 22 years old, she was diagnosed with acute hepatitis. As a result, the doctor advised the whole family to have our liver checked. Only my second eldest brother did not have the virus, but my eldest brother had liver cirrhosis, and my eldest sister, youngest brother, and I had hepatitis B. After these shocking results, we wondered “How could we all have these issues with our liver?” We thought maybe there was a problem with the examination, so we visited multiple different hospitals and had many tests done, yet the results remained the same. For some time, we were all in shock. By then, my eldest brother and sister and youngest brother were all married and lived separately to us. My youngest brother lived far away for his job, so there was only myself, my second eldest sister, and my parents at home. I was in Year 12 of high school and my mother told me I had to avoid my sister as I couldn’t afford to get infected from her. Telling me not to come home until she recovered, my mother sent me to the local study room to stay and delivered clothes and food to me. From that moment, my sister went into self-isolation in her room. She had a urinal placed in her room and was not even allowed to use the same bathroom as everyone else. She was also given her own designated towels, cutlery, and so forth. All the tableware that came out of her room was cleaned in hot water, and her clothes were separately boiled and washed. Like this, my sister endured one month of prisoner-like confinement. Self-isolation isn’t an unfamiliar term now because of COVID-19, but 35 years ago, this kind of quarantine was only done during big epidemics comparable to the Plague. My mom threatened me not to tell anyone about it. Due to the belief her hepatitis could potentially spread, the focus was solely on quarantine and treatment and disinfection, without any emotional consideration about how my sister would have been dealing with it mentally. Rather, my eldest brother began continually pouring all his anger and frustration at my sister, saying that all of the liver-related diseases in the family came from her hepatitis. In hindsight, my brother’s liver cirrhosis began long before my sister had acute hepatitis and had nothing to do with her. At that time, we had never heard of hepatitis and liver cirrhosis before, and we only knew that hepatitis B was infectious. The most powerful person in the family was angry and continuously blamed my sister, so we believed, without a doubt, that it was my sister’s fault. 26

After being trapped in her room for a month, she was declared as recovered from the acute state of hepatitis. She asked if she could stay with her college friend for a while – whose hometown was in front of the beach on the southern coast of Korea. My dad immediately said yes. It was so strange; I could never have even dreamt that he would approve. My father was very strict and old fashioned, so if even one of us sisters would come home later than 9pm, the whole family, even our mother, would get punished. So, the fact that she even mentioned the idea of staying at her friend’s house was just unimaginable. Furthermore, it wasn’t for just a day, it was for a few months, and the way he said “yes” so easily was very surprising. It was only later that I learned that my sister had suffered from severe depression after recovering from acute hepatitis, so my father allowed her to go thinking that the fresh air might be good for her. She was only 22. She was so young, but was quarantined alone in her room, enduring fevers, vomiting, and abdominal pain by herself. I could never imagine how hard it would have been. How did she cope? The physical pain alone would have been too much, but the shame of being isolated due to a serious disease, and the guilt she must have felt towards her family because of our eldest brother’s blaming would have been doubly hurtful. I only met my sister again after she had recovered, and had spent all that time separated from her, so at the time my immature self was jealous of the fact that she got to go on a trip. Twenty years later, she was diagnosed with liver cancer. Thankfully, it was discovered early in its first stage, and the doctors said she was incredibly lucky. It has been 15 years since the surgery, and though they say she’s stable, we are still not completely worry-free. When dealing with hepatitis B, prevention is obviously the most important thing, and there’s also a high chance of getting liver cancer after recovery of acute hepatitis. While witnessing its effects first-hand, I was able to realise that it is a scary and tough disease that needs regular, long-term management and attention. I look back on it now. If only we had better knowledge about hepatitis at the time, 27

‘We could have stopped my eldest brother’s ridiculous words…Then my sister wouldn’t have become depressed…’ ‘And she wouldn’t have gotten liver cancer…’ These are the kinds of thoughts I have. When I think about my sister, who, instead of receiving comforting words from her family close to her, received more hurt instead, my heart is ridden with guilt again and again.

Ahn Jin Sook adds “I wrote more than I expected, with the thought of giving someone comfort, or providing someone with information. Of course, myself and my whole family are regularly seeing a specialist and are living healthily while managing our hepatitis B. I hope, through prevention methods and regular check-ups, everyone who reads this lives a healthy life.” Editor’s Note 1: Hepatitis B is often transmitted at birth, so it is common for multiple siblings from the same family to have hepatitis. In some cases, symptoms of acute hepatitis appear like the author’s sister, but for many people there are no symptoms, making it difficult to manage. However, people who have hepatitis B can live healthily by regularly monitoring their liver health throughout their lives. Editor’s Note 2: Hepatitis B is transmitted through blood and other body fluids, and cannot be transmitted through saliva or other means, so eating separately or disinfecting clothes or towels has nothing to do with hepatitis B prevention. 28

How I got to know SECOND PRIZE WINNER | KOREAN | ACQUAINTANCES - JANG SOO KIM

Jang Soo Kim

I would like to write a few lines about what I have experienced in Korea. It was the time passing from Spring into beginning of the green Summer of the year 1994.

My wife and I were in Ganghwa Island with my friend and his wife. Both were younger than me and we were always together. My friend’s house was also right across the narrow road from my home, so we gathered whenever we had time. One day, while inside my house and about to start grilling prawns, my friend was suddenly overcome by pain, saying that his upper right abdomen hurt. 29

Thinking it was food poisoning, I drove him and his wife to the hospital in Sinjeong-dong. A doctor there said that it was highly likely to be hepatitis due to the red spots on his shoulder and chest and pain in his right abdomen. The doctor recommended that my friend and his wife get a hepatitis B test because it is infectious. I’ve always been with them, so I did the blood test too. When I went back home, I persuaded my wife to get a blood test too – even though she hated needles. After an uneventful week, I finally went to the hospital with my friend and his wife to see the results. I had hepatitis B antibodies, and my wife and my friend’s wife had no hepatitis virus or antibodies. They were recommended to get the hep B vaccination. However, as expected, my friend’s hepatitis B had progressed considerably. The result showed that it was dangerous if he did not take action immediately. My wife and I returned home, worried about my friend, and our own, health. “You guys always drink together. What are you going to do now?” – my wife teased me because I liked drinking with him. I had no thoughts about hepatitis B before this. Suddenly, however, it was the case my friend and I now had to protect our livers due to learning we had hep B. The doctor said that most liver cancer occurs from hepatitis B, and the incidence of hepatitis due to alcohol is lower than expected. It was hard to believe that, because of the strong belief within the community about the relationship between drinking and hepatitis. Anyway, I was relieved by the doctor’s words since I loved drinking so much. The next day, we headed to the hospital. I was comforting my wife who hated needles and was uncomfortable with the thought of getting an injection. I asked the hospital receptionist several things related to the hepatitis B vaccination. Firstly, she explained the number of times of injection and the cost. The public health centre fee (in Korea, led by local health district at lower cost) was 2,400 won ($3 AUD) while this clinic charged 14,000 won ($17 AUD). The receptionist said my wife had to get vaccinated three times in total, the second time would be 30 to 40 days after the first jab, and she could get the third jab five months after the second, and then it would be over. I asked why the price difference between the health centre and the clinic was so wide – was there a difference in the effectiveness of the vaccine? 30

“There’s no difference in the efficacy,” I was told. “The public health centre is run by the government, as you know.” I could only laugh at the simple and accurate answer to my useless question. After writing down my wife’s personal information and waiting for about ten minutes, her name was called, and we entered the injection room together. They allowed only one person inside. The nurse tried to stop me but smiled and allowed me, remembering my wife’s fear from when she had the blood test. I sat holding my wife’s hand while the nurse pulled the vaccine from the refrigerator and squeezed it with her hand for nearly a minute to raise the temperature. She said it could hurt if the drug was administered too cold. The nurse then slowly administered the injection to my wife’s upper left shoulder. When I asked my wife if it hurt, she said it was just stinging. After that, my wife was vaccinated against hepatitis B two more times, and there were no side effects.

If anyone has fears regarding the hepatitis B vaccination, I would like to tell you that you don’t have to worry at all. If you do not have antibodies, hepatitis B vaccination alone can significantly reduce the possibility of liver cancer. Avoiding vaccination makes your life and surroundings difficult. Meanwhile, my friend continued treatment as prescribed by the doctor. He quit drinking and smoking to overcome the disease and continued to use medication for nearly a year according to doctors’ prescriptions and instructions. But, with fatigue, loss of appetite, and pain in the right abdomen he showed no signs of improvement. His wife cooked only protein-rich foods such as beans, tofu, and fish, according to people’s opinions that using various methods could be effective. After two green summers passed, his illness was significantly improved, the pain and fatigue in his right abdomen disappeared, and his appetite was revived, perhaps due to the doctor’s treatment and the diet focused on protein. On the morning of the early summer rain, my friend and his wife said they were going to the hospital because the results were coming out, so I gave them a lift. When they came out of the doctor’s office, they smiled brightly at me. “Jang Soo” they told me, “the liver enzyme level is normal, and now I am almost cured and have a very stable inactive hepatitis B.” “Yes... his case that hepatitis B has reached this stage of stability, is only one in thousands.” At that time, I first felt that I could be so happy with other people’s business, not my family. They hugged each other in tears of sadness and joy as they remembered the time, they had fought the hepatitis B virus.

Jang Soo Kim adds: “I sincerely hope that one of my humble stories will help prevent hepatitis B infection, as if sprouting even in rough rain and wind.” *Editor’s note - Hepatitis B usually has no symptoms, but sometimes symptoms of acute hepatitis appear suddenly. **Editor’s note - hepatitis B may be “inactive” depending on the medication, but it is a disease that requires regular liver monitoring throughout the lifetime. 32

Story of My Liver Donation THIRD PRIZE WINNER | KOREAN | ACQUAINTANCES - BRIAN SEO

Brian’s Father and Mother in Sydney after liver transplant surgery

June 10 is my daughter’s birthday. But exactly 20 years ago, June 10 was a completely different day for me. It was the day my father and I had our operation, in the same room, at the same time... ‘Biological liver transplant surgery’.

This remains a special memory. This event gave me the strength to live with just a little bit more positivity and gratitude in my heart. Despite leaving a large, ugly scar - 31cm wide and 16cm long - I will later be able to show my son and daughter without shame. My father and I had the liver transplant surgery on June 10, 2001. I was the donor.

It’s been so long now that it feels like a very old story. The surgery was successful, and recovery was quick. I was a sergeant in the army at the time. I received the surgery exactly two months before discharge. I’m joking now, but if I had surgery when I was a private, it could have been ‘the end of military service and straight to university for me! Unfortunately, I had already endured all the hardship of the lower ranks and only received the surgery when my rank would have allowed me to spend my time “living like a king”. I was allowed to go home immediately after the surgery, but I chose to return to the military, maybe it was because of my own foolishness or some kind of ‘manly pride’. Even my commander was trying to stop me, but I had some sort of military spirit at the time, and my determination to fulfil my entire service was so strong that even he couldn’t hold me back. I don’t know if I perhaps felt concerned that my social standing would be slightly affected if I got discharged before the end of my service. Right now, I am living in Sydney, Australia. No one asks me about my military service. But I still don’t regret it in hindsight. More than anything, since my father was able to continue his life... My father lived with chronic hepatitis C in his youth, which later led to cirrhosis and liver cancer. When I had a holiday during my military service period, his stomach vein burst, and I went to the emergency room, seeing the disturbing situation in person. A family meeting was held, and that was where I first heard of liver transplantation, which had been unfamiliar to most people in the family until then. Both my older sister and older brother volunteered to do it, but my father strongly refused. This was because they had their own spouses who may have had a different opinion on this situation. Then I volunteered. I was the youngest in the family, and since I was in the military at the time my physical condition would have been at its peak. Then! No one disagreed. Even my father. ‘Oh! It’s me! Ok, I can do this! I guess I’ll do it!’ Fortunately, the biopsy results and my liver condition were excellent, so I was deemed suitable. I returned to the military and waited for a call. The date of the operation was chosen, and I went to the hospital in my military uniform. At the time, my father was waiting for his surgery in a six-person ward and, as soon as I entered the room in my military uniform, he quickly dragged me out. The other five people were all hepatitis patients, and all had symptoms of ascites and jaundice. He had dragged me out because he felt sorry for them. 34

I was someone who had never been hospitalised before, aside from this surgery, so I was able to change easily from my military uniform to the hospital garments by myself. Yes, suddenly, I became a patient. The surgery ended successfully, and I was in the intensive care unit, in a lot of pain. Strangely, I remember seeing a clock in front of me, and feeling like no time was passing. The people told me later, after waking up from the anaesthetic, I apparently gave a very official military salute to Dr. Lee Seung-gyu, a world-class authority on liver transplant surgery. What kind of military spirit came over me? I also want to tell you about how wonderful my commander was then. I heard this from the other soldiers, but apparently, on the morning of my surgery, my commander gathered all of the soldiers, including the executives, to the training ground. To all the soldiers, he said, “Since we have different religions, let’s all pray to our own god that Sergeant Seo and his father will have a successful surgery today.” Usually, people don’t want to go anywhere near the military unit after being discharged, but I went to visit our commander quite often, and even went to say goodbye before moving to Australia. Brian Seo and his father having a good time in Sydney after transplant surgery

I returned to university, where I had been majoring in vocal music studies, but my teacher was concerned about me and asked if I should perhaps change my major worrying about the condition of my abdomen after the surgery. While thinking a lot about my career, I came here, to Sydney, in early 2002 to study English for a year. It was such a charming country and city, and I grew more and more attached as time went on. I also met my current wife while studying here. I remember when I first visited my wife’s family in Korea. After greeting her parents, I felt like it would be right to let them know about my liver surgery, so I told them about it. Of course, it wasn’t because I wanted praise or anything. People’s perspectives can differ, even when hearing the same words. After eating a nice meal and returning home, my wife, who was my girlfriend at the time, called me, in tears. Her father had been worrying, saying, “It was good of him to do the operation, and he’s fine right now because he’s young, but you don’t know what could happen when he’s older.” It was a serious situation. I was thinking about how sad my father would be if he heard about this. Our love stayed the same, but our relationship became stunted. Even so, I didn’t resent my potential father-in-law. I could fully understand his concern. My father-in-law had a friend who was a doctor, and it seems that he asked him in detail about his concerns. Of course, he would. His daughter brought home his potential sonin-law, but it turns out I had 70% of one of my organs taken out. In short, the doctor apparently answered that there would be absolutely no problems, and rather went on to praise me, saying I was a really impressive son-in-law. A complete stranger had become a great source of strength for me. Here’s the funniest part. At our second meeting, my father-in-law immediately began calling me ‘Seoseobang!’ (“our dear son-in-law Mr Seo”), and acknowledged me as his son-in-law. At that time, I was only a student, but later in 2004, my wife and I got married. My father received my liver in June 2001 and lived healthily until he went to heaven in January 2007. And from what I know, he had no problems with his liver following the surgery. In 2003 and 2005, he even visited Australia with my mother and had a lot of good times here. But from a family member’s perspective, I’m sure you can all understand the craving for him to have lived ten or even 20 years longer. After a ten-hour flight from Sydney, I was also able to meet him in his last moments. He had been waiting for his last breath while being barely conscious. When I arrived, everyone woke him up, saying that your youngest son is here, and I met his eyes. He 36

recognised me and smiled brightly. He couldn’t move his hands and feet before, but he raised his hand and touched my cheek. The next day, he passed on peacefully. I had quite a big operation at the relatively young age of 23. Twenty years later, medical procedures have improved, but at the time, it was a dangerous operation even for me as a donor. The day before the surgery, the doctor in charge of the operation informed me about various things. They talked about how this could happen, what could happen, negative remarks like that, as well as the hospital’s position in the case of an incident, and my guardian’s signature. I was scared. Because of how they were saying it could go wrong. However, everything went smoothly. Finally, this is what I really want to tell you. In the recovery process, something changes inside of you. Life begins to seem a little different. It’s a feeling that tells you that you can’t just go on living like this. It’s hard to express in words, but you begin seeing how beautiful the world is, and you feel like there’s so much to live for. A determination to really live your best life, but not by earning a lot of money. We’re all trying to get by and live a good life, but even now, there are so many liver disease patients who are barely holding onto their lives, waiting for a liver from a donor or a brain death patient. From what I know, liver diseases can be prevented in advance due to developing medical practices. Before your body and mind becomes wearier, get a medical check-up in advance, and rather than getting information from the internet, get an accurate diagnosis and learn prevention methods from your current doctor. I hope that at least our Korean residents will be able to avoid liver related diseases in the future.

Brian Seo adds: My father had hepatitis C not B and had been in bad shape since the age of 50. My mother and my siblings do not have either hepatitis virus. What’s unusual is that even though this situation came to my family, I didn’t get the hepatitis B vaccine and I was not even aware of it. Just a few years ago, my GP did a blood test said I didn’t have hep B antibodies, so I got vaccinated right away. I never heard from any medical staff to get vaccinated for hepatitis B in Korea, so I’m very grateful that my GP in Eastwood immediately identified and took measures to get the injection. My family has had a hell-like experience with liver disease, so I will always be interested and actively participated in the way of preventing hepatitis. 37

My Friend Lived Life to the Full PARTICIPATION AWARD | KOREAN | ACQUAINTANCES - JANE KIM

The first time I met my Uni friend, he was tall and well-built in contrast to his gentle voice. This was at the first welcoming party camp for freshmen I attended after entering college. There were many people around him singing famous Korean folk songs, playing a guitar, regardless of their ages.

He was always surrounded by people and only ever showed a sunny disposition with a smiling face. I got close and we became like a real brother and sister. He informed me that he had hepatitis B. I was not interested in, and was ignorant of, the disease because there was no one else around me with hepatitis B. He said it could be contagious and added that it was not transmitted with saliva, so I did not give any particular thought to it. No, to be honest, I feel that I shouldn’t be saying that I was concerned about hepatitis B and transmission, because we were so close. However, as I got older after being a mother, the blurry concept of hepatitis B turned into fear at some point. Rather than when I first heard of it, I remember searching the Internet for hepatitis B a few years later, and the path of its contagiousness or transmission. He always looked bright, but he hated speaking about his military service experience unlike other Korean men, because of the incident in which he eventually was dismissed to return home due to his hepatitis B. As time passed, I was informed of his employment. Although he passed the final interview for a company, he almost cancelled the recruitment because his hepatitis B was confirmed in a medical examination. But he protested to the HR department that it was unfair and fortunately, it was accepted, and he was employed. Originally, he didn’t smoke, but he liked drinking and interacting with people so much that he was worried... Because there were many drinking occasions at the start of his work. Now he takes good care of his liver and always say that the results from his regular check-ups are good. If it weren’t for him, I would likely be ignorant of hepatitis B and have incorrect information – like believing “saliva or sweat can be the pathways of hep B”. That’s why I try not to be prejudiced or narrow-minded about anything in the world. Nevertheless, even if I try, I feel that it is so easy to get narrow minded as I age. 38

He has anxiety that complications may occur at any time, but that doesn’t mean he is afraid. He is still dating women who test for antibodies and get vaccinated. He takes medicine as well, gets regular check-ups, and lives a busy life no different from other people.

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