Robert’s story

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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.

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

“I’m not a victim. I’m alive, I’m well and I’m moving on with my life.”

“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 Robert 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.

Robert says he returned home and cried for a week. He informed his support people and began making funeral arrangements. Despite the odds, he fought on and cleared the KS.

Robert received the 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.

Robert has an extremely positive attitude towards life.“I’m not a victim. I’m alive, I’m well and I’m moving on with my life.”

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 than 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. I had side-effects including insomnia and anxiety but they were minor.”

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. I haven’t woken up with a hangover for 25 years it feels amazing. 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.’

“It is true. Everything you put in your mouth is going to affect your body. I know some people can’t afford to eat everything fresh, but even if you can plant some vegetables in your garden it can make a difference.”

He has some advice for other people living with viral hepatitis. 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 travelling.

Robert’s story was also published in Edition 1 of Hepatitis Matters.


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