Heartfelt story of local man diagnosed with hepatitis C

A local man who shunned treatment for a silent killer has praised staff for not giving up and helping him get ‘clean’.

: Hepatitis C clinical nurse specialists Richard Russell and Clare Robinson with Stephen

Stephen, 53, of Scunthorpe, was diagnosed with hepatitis C back in 2010 but turned down treatment as he couldn’t face the potential side effects – despite knowing it was a potential death sentence.

Fast forward eight years, and with the advent of new treatment, Stephen began treatment at Scunthorpe hospital and today is cured of the blood-borne virus. People can live with the illness for decades without knowing they have it but if left untreated it can lead to potentially fatal cirrhosis or cancer of the liver.

Stephen is telling his story as part of 2019’s World Hepatitis day which is being held on Sunday July 28.

Hepatitis C clinical nurse specialists Clare Robinson and Richard Russell are keen to support people who wish to seek treatment for their Hepatitis C and support them on their recovery journey.

Clare said “It is vitally important that people get screened as treatment is really effective and simple to take.”

Stephen, who was exposed to the virus through intravenous drug taking, said: “If my story makes one person get tested, and get treatment then it is worth it. I want to give something back for all of the help and support I have received. Hepatitis C is seen as something dirty, that people are too embarrassed to talk about as it is stigmatised and a taboo subject.
For the first time in years I feel clean. I have been free of drugs for the last three years, and I am now free and totally cured of hepatitis C.”

Stephen’s addiction began at the age of 14 when he started taking prescription drugs before moving onto heroin. He said: “We all shared needles back then, as syringes were in short supply and were worth just as much as a bag of gear. We all knew about the risks of HIV but we didn’t care. No one had even heard of hepatitis C. To be totally honest if I had I wouldn’t have cared, it was just about the next fix.”

He has managed to kick his habit several times over the years, and during one such episode in 2010 found out he had hepatitis C.

“I did come to the hospital to talk about it. The treatment back then was different to today’s and it really put me off.”

Richard said: “Previous treatments saw patients having to have injections over a course of either six or 12 months. The main problem was that it made people extremely ill, they had to be drug and alcohol free but the medication made them look like they were back using.”

Stephen said: “I had seen people on the treatment and they looked like they were rattling, as if they were coming off drugs, and I didn’t want to look like that. I had worked hard to get clean and I didn’t want everyone thinking I was back on drugs.”

He said the other problem was having to have regular blood tests. “I had no veins left; I was covered in track marks so getting blood out of me was really difficult. No one ever seemed to listen to me, they always knew best on how to get blood. I went home that first time covered in needle marks and bruises.

“I didn’t go back. I was starting to get my life back together and I didn’t want to ‘rattle’ and people think I was back on the gear. It was just too scary. I didn’t tell anyone as I felt so dirty; I didn’t even tell my kids.

In the summer of 2018 Stephen, after a chance chat with the hospital nurses, heard about the new treatment and decided to give it a go. It is a daily tablet for up to 12 weeks, with next to no side effects and a 95 per cent cure rate.

Stephen said: “I was off the drugs and this was another part of my recovery. I wanted to be really clean – rid of the drugs and hepatitis C. Recovery is a lifelong journey and this was just the next step.

“Hepatitis C and being a junkie always has a ‘dirty’ stigma attached to it and people feel as if they are dirty on the inside and out. Staying clean is a battle every day but I am proof it is possible, and now I am also free of hepatitis.

“The treatment was a doddle. The hardest thing was remembering to take the tablets but I just did as the nurse told me and took them at the same time every day. After four weeks I was free of the virus.

“I would encourage people to get tested for hepatitis. The treatment isn’t like it used to be. It is so easy. I have been through my treatment and no one even knew. People have kept telling me I look really well. If I can do it, so can other people.”

He said: “Being a drug addict is a 24 hour job. If you are not taking gear, you are looking for gear, looking for money or looking for where you can get money from. It is endless. When you are clean you suddenly have so much time on your hands, it is boring.

“You also start to feel emotions you haven’t felt for years. That is scary as you have been on drugs so long you don’t have the coping strategies other people do. If you get out of bed and feel a bit low, it was always grab a bag of gear. Now it is understanding that people have ups and downs.”

To fill his time, Stephen now runs a detox café in town two hours every day for people on drug treatment programmes and those who are clean. He sees on average 17 people a day. “We provide support, as well as social events and days out. It is about having a support network, and giving people the chance to talk about their experience.”

He added: “The hep C team at the hospital is wicked. It is people like them that make you believe in yourself, that you can be truly clean.”

Clare said: “Patients are tested at four weeks, 8, 12, 24 and 48 weeks post treatment to make sure they are virus free. At 12 weeks post treatment completion if the patient has a sustained viral response we are able to tell them they are cured of hepatitis C. We just need to get the message out there that treatment is so much better nowadays.”

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