John’s story

It’s been a rough road for John, 68.

In 2009 John desperately needed a liver transplant. Doctors told him he only had a few months left to live. But now, thanks to a life-saving operation and a new-generation treatment, he is enjoying life and taking each day as it comes.

Photos: Supplied.

He lived with genotype 1a of the hepatitis C virus which had caused severe cirrhosis (scarring) in his liver. John was diagnosed in 2006 but likely lived with the virus for many years.

Around the same time he was diagnosed he started to experience side-effects from hepatitis C. John started to experience side-effects from the virus around the same time he was diagnosed. “I had to give up work in 2006 because the virus was giving me blurred vision”. John worked in the earth moving business. “I felt crap all the time. I felt so tired and drained.” John and his wife Sharon were living in Australia at the time. They decided to move back to Dunedin for John to receive medical support. “My health deteriorated quickly, but it was nice to be back in New Zealand. At one stage I went into a coma for three weeks.” He fought on for a couple more years and in 2009 underwent a rare and life-saving surgery.

On July 14, 2009, John became the first person in New Zealand and sixth in the world to have a liver transplant and heart reconstruction in the same procedure. Two teams of surgeons worked for more than 13 hours to transplant a liver and install a mechanical valve in his heart.

John says his old liver ‘looked like crocodile skin’. “The damage was severe. There was only a little bit of it working.”

He is very grateful for Professor Ed Gane, a liver specialist at the New Zealand Liver Transplant Unit (NZLTU) and trustee at the Hepatitis Foundation.

“If it wasn’t for Professor Gane I wouldn’t be here today. He made sure I was at the top of the transplant list because otherwise, it was the end of the road for me,” says John.

While the transplant provided John with a healthy liver, the hepatitis C virus persisted and continued to cause him health problems. The virus was attacking his new liver. John knew he had to treat the hepatitis C virus if he was going to live a long and healthy life.

At the time the only funded medication in New Zealand was Interferon treatment. Interferon treatments have severe side-effects and often don’t clear the virus. More effective treatments were available, but they came with a hefty price tag (up to $100,000). John is thankful to have received a new generation drug through compassionate access at the NZLTU. In mid-2015 he started a 12-week treatment course of Sovaldi and Ribavirin.

Top: Cirrhotic liver Bottom: Healthy liver

“After the first month of treatment, I felt brilliant. But during the last few weeks, I felt like crap – I had migraines, blurred vision and nausea. The last day of treatment was awesome because I knew I had made it through. Suddenly I began to feel so much better.” John is now hepatitis C free. “The treatment has changed my whole life.

“I’m so grateful for everything everyone has done for me.”

Now, John has retired with his wife and moved to Perth. Without hepatitis C weighing down his quality of life, he is enjoying spending quality time with his children and grandchildren.

He is grateful for his wife Sharon for supporting him through the journey. “She has been there right the way through. I almost never made it but I survived. It’s been a rough road but now I’m just enjoying life.”

John hopes he can help others by sharing his story.

Note: In 2016 new generation treatments were funded in New Zealand to treat the hepatitis C virus. Click here for more information.

 

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