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Uyen’s – hep B story

I thought it was an "invisible" challenge until I, but then I discovered it was "dangerous in Australia"- Hepatitis B. 

The day my diagnosis was confirmed and I got moved to engage in regular monitoring for hepatitis B wasn't a good feeling because I had ignored it after the first time I was officially diagnosed in late 2008 in Australia. I found out when my friend and I went for a general blood test.

The question remained did I have hepatitis B, so I requested to have a hepatitis B blood test?

I knew one of my family members had it and I had previously had the test done which showed a "positive result" in Vietnam a couple years before then.

The Doctor in Vietnam said "it (hep B) should go away after 3 months, otherwise come back after 3- 6 months to check again". Given that my body felt absolutely fine, I assumed it should have gone away and I never needed to have another checkup while I was in Vietnam.

Later in in Australia 2008, I decided to take another blood test, I was told I had hepatitis B - they printed the results and handed it to me. I tried reading it but all I could understand was "this patient is a hepatitis B carrier...”

The doctor did not talk to me about how to manage my hepatitis B. So, as you can image, I left the clinic quite shocked and upset!

I wasn't satisfied with the service, I had paid for as my doctor left me confused, with unanswered questions as to what my future held (what does this mean in plain language terms for a patient without the technical medical jargon) – I felt upset at how I was treated.

As an international student, money was more of a concern to me than the diagnosis, and it seemed not to be a concern to the doctor anyway. So I kept living on knowing I had hepatitis B while looking it up on the internet sometimes. This is another story about my hepatitis B learning journey.

Six months later in 2009, I got a letter from the same clinic. It was an "urgent letter". Reading the letter, I was so nervous and shaky. I thought it was all my fault for not coming back and following up!

There was a sense of self blaming on me at that time. The letter asked me to call the clinic to book an appointment as soon as possible regarding the diagnosis of hepatitis B.

"Why didn’t they do what they needed to do when I was given the diagnosis? What else do they want from me? Why do they make it sound like I don’t care about myself? There were a lot of questions running in my head. At this time I started to feel upset about the first doctor not followed up on my diagnosis, and I started to worry about spending money on the next doctor’s visit.

I went to the clinic and hesitantly requested for a different doctor. The new doctor showed much more concern about me having hepatitis B and the fact that it had slipped through the system. All I can remember was that she said "this is contagious and dangerous in Australia!" and suddenly a guilty feeling arose within me for not following it up.

I also felt horrible at the thought of carrying it in Australia. I wondered if it was that "dangerous", why the other doctor didn’t tell me about the risks.

I was also confused with the healthcare system because if the first doctor hadn’t raised concern, then how could I have known what steps I should take.

Then I felt like all the responsibility was mine for not taking care of myself, however if the first doctor had told me when to follow up, I wouldn’t have been in this situation. .

So I cried during the consultation; feeling blamed and sad as I learned more about the disease (which was not very pleasant information). It was quite a rough consultation emotionally but the outcome meant I was going to get my health back on track. I got referred to specialists in a hospital as an outpatient and the doctor also sent me to have more blood tests and ultrasound.

During that session, I told the doctor about my initial doctor experience and about how poorly the diagnosis was delivered, and that I got charged the same amount of money on both sessions. As a result, when I went to collect my blood test results, the doctor charged me $5 less than her first consultation.

It demonstrated to me that I could talk with her and share my feelings and concerns about things that related to the diagnosis. It showed she was listening to her patient and I felt more comfortable to start asking more questions. 

Since then, my monitoring has been on track with the specialists. Now 7-8 years have now passed, and I’m hoping the worst was behind me.

This is just a little story about how I got treated when I got diagnosed in Australia. All I could think of at that time was that I wasn’t lucky to have been treated like that. It was just bad luck.

Now I think differently that this should not happen to anyone. It's not about luck, it's about responsibility and the authority of the health care professional that could have an influence on their patients.

Hepatitis B has always been a challenge in my life. It hasn’t changed me physically but it has put me in a lot of situations where I was pushed to change my career and feel less than my peers especially because of the career change and my immigration status.

I gave up nursing and rejected the Permanent Residency (PR) invitation from the Immigration Department, changed to a different visa and followed a different career path because I was scared that the health assessment would be much harder and I would get rejected if I were a nurse living with hepatitis B.

It was a painful process to have to give up your career I once imagined I could bloom in. Searching on the internet looking for information about hepatitis b, I stumbled across Hepatitis Victoria, I realised I could use my nursing skills and hepatitis B to my advantage and participate in the volunteer programs they can offer.

When I was sick of being so disappointed and distressed because of giving up my “plan” to get PR, I joined Hepatitis Victoria. I have been with Hepatitis Victoria for a few years and what I have learned and gained from being a part of the organization has been extremely valuable to me.

Looking back to the start of my journey living in Australia I can see the patterns I always took looking for a second option to settle in Australia in case the first plan was doomed for failure due to the barriers I faced living with hepatitis B. I now know I can’t deny I don’t have it and pretend it will go away. Although I have learned to live with it. I wish Australia would soon find a “cure” for it.

I feel fortunate the place where I live is where the latest discoveries for a hepatitis B cure are happening right here in Melbourne at the Walter and Eliza institute.

Even if the health assessment is conducted in a difficult way for different PR visa types, I would never turn down another opportunity to settle in Australia. I would find it quite ironic for Australia to reject a migrant living with hepatitis B whist Australia is leading the cure discoveries in the world. So, while I’m here I’ll make the most of having hepatitis B by sharing my experience living with it and trusting that one day, Australia will find the “cure” for hepatitis b in the near future.

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