Hepatitis Matters issue 1

Hepatitis Matters Issue 1: Autumn 2017

Susan Hay, CEO, The Hepatitis Foundation of New Zealand Welcome to the first issue of our hepatitis B and C e-newsletter.

This e-newsletter replaces the Talking Hep C magazine which was funded by the Ministry of Health until December 2016. The Foundation is keen to still share patient stories and information about how you can keep yourself healthy whilst living with viral hepatitis.

We have a dedicated team of Administrators and Community Hepatitis Nurses who have a wealth of knowledge and can talk to you about viral hepatitis. The team at the Foundation is here to support everyone and ensure you receive education and regular follow up.

ultrasound is ordered for you if you require one. Our community hepatitis nurses will also continue to make home visits if you have difficulty getting to a laboratory for your blood test.

If you have any questions about your care or blood test results you can call us on 0800 33 20 10 or visit our website www. hepatitisfoundation.org.nz.

We hope you enjoy this e-newsletter. In this issue, a Kiwi man hopes to help others by sharing his story.

Looking after yourself with viral hepatitis

Our Hepatitis C Programme is now being managed from a regional perspective.

Essentially there are four regions in NZ (Auckland & North, Midlands, Central and South). The Foundation is still here to help you understand how to access treatment but your GP is the key point of contact and will ensure you have regular blood tests and Fibroscans. If you need someone to talk to you can call our helpline on 0800 33 20 10.

There will be no changes to the National Hepatitis B Programme. The Foundation will continue to provide reminders about six monthly blood tests and ensure that an

The Hepatitis Foundation of New Zealand Call the Hepatitis Foundation on 0800 33 20 10 www.hepatititsfoundation.org.nz Find us on Facebook, Twitter and YouTube.

Cut back on alcohol Heavy drinking is hard on your liver. Drinking less alcohol is the most important change you can make.

Avoid fatty foods Fatty foods clog your liver and stop it working.

Avoid cannabis Heavy cannabis use can scar your liver.

Robert’s story

personal story

Robert, 63, has had one crazy journey. He has worked as a hairdresser and make-up artist since he was 22, lived in Hong Kong for 15 years, battled cancer, had two liver transplants and lived with hepatitis B and C for more than two decades.

transplants at the NZLTU (New Zealand Liver Transplant Unit) and says he is very thankful for his specialist Professor Ed Gane. Professor Gane is a Consultant at NZLTU and a trustee at the Hepatitis Foundation. “He is amazing at what he does. Professor Gane has saved my life a few times,” says Robert.

“I contracted hepatitis B in Hong Kong. I was diagnosed in 1994 and unfortunately my liver was already cirrhotic (severely scarred) by then.”

Robert’s hepatitis B is asymptomatic meaning he doesn’t experience any symptoms from the virus. It wasn’t until he began to experience blackouts that he realised something was wrong and went to the doctor.

In 1997 Robert moved back to New Zealand to go on the waiting list to receive a liver transplant.

Robert received his first liver transplant on January 4 1999 and hoped to move on with his life by taking care of himself and his new liver. Much to Robert’s surprise, the doctors discovered he also had hepatitis C, genotype 1a.

Robert lived with his new liver for almost three years until a bile dysfunction caused his skin to be so incessantly itchy he couldn’t sleep. Robert received his second liver on 28th December 2001. During the transplant the surgeons discovered the bile dysfunction was likely caused by a Kaposi sarcoma (cancer in the soft tissue) and Robert was told he had six months to live. Despite the odds, he battled on and cleared the KS. Robert received the

Photo: Supplied

Now living in Auckland, Robert wants to help others in any way he can by sharing his story.

In 2016 Viekira Pak, Viekira Pak-RBV (Ribavirin) and Harvoni were funded in New Zealand to treat the hepatitis C virus. These new generation medications have shorter treatment durations, fewer side-effects and are more effective then interferon treatments. In September 2016 Robert was treated with a 12-week course of Harvoni and Ribavirin which cured his hepatitis C. “I have felt unbelievably better since the treatment.”

He still lives with hepatitis B as there is no cure yet, but Robert says he still lives a healthy lifestyle to help keep virus at bay. “I’m fit, I stopped smoking and drinking alcohol. Alcohol causes great damage to your liver and you are particularly vulnerable if you have viral hepatitis.

“After my liver transplants Ed Gane said to me: ‘Now you can choose what lifestyle you want to live and it is going to greatly impact your health and your future.’”

Robert says the people around you can have a huge influence on your life. “I’m lucky to be surrounded by positive and amazing people. If the people around you don’t understand what you are going through, help them understand and make them aware.

“It’s also important to remember that attitude makes a difference. While life can have its ups and downs, try to have a positive attitude if you can because it does make a difference. So many people take life for granted until they get sick.”

In his spare time Robert likes to help others.

He volunteers at a salvation army, enjoys gardening, going to the gym and traveling.