My Hep C treatment journey
by John Lindley
How did you find out you had Hep C?
I found out I had Hep C through testing – I went to the Magdalene hub in Exeter. Although I was asymptomatic, I had heard about Hep C due to a friend having it during the 90’s before there was really any treatment.
What was the test like for you?
It was a simple finger prick. You have to put your print onto a few circles on a piece of paper. In some ways this bit was worse than the treatment. The test was for Hep B and Hep C, but now when they do the test, they also check for HIV. Back then they only tested for antibodies which shows that you have been exposed to Hep B or C. Now the tests actually show if you have it.
Back then my life was very chaotic and so it took months to get the actual blood tests. I had to go to vascular access clinic at Exeter hospital This was the test which confirmed that I actually had the virus, not that I had just been exposed to it.
I had geno type 1A which used to be the worst one for treating but with the new treatments it is now the best one to treat.
The staff at hospital were so good. They knew how to get access to my veins and it was usually really quick – less than half an hour!
What was the reaction to your diagnosis?
I had to go to see my Recovery Worker for the results of the antibody test because I was in shared care. When she told me I felt like I went into shock. Years before this I had a motorbike crash and to be honest it felt very much the same. I was cold, clammy, sweaty.
It was better when I got out into the fresh air. I used to hate group work, but my worker used to insist that I went along. She could see the shock that day so asked if I wanted to pass. If nothing else, that cheered me up!
What was your treatment like?
My GP referred me to the vascular access clinic for a blood test to find out if I actually had the active virus. I experienced some minor weight flux and hair loss. Once I finished the treatment, everything went back to normal and I lost the weight. The treatment takes 12 but some people have to do a further 4 weeks depending on the drugs that you are on. It was 16 weeks for me. With the drug that I was on, I know that private treatment can cost upwards of £50,000 but I was receiving it for free, so I never missed an appointment and I always arrived on time. I was beginning to be on an even keel by then. You are supposed to take the tablets at the same time each day which I always did as well. Throughout the treatment, I was given multiple blood tests every 2 to 4 weeks to monitor the virus’ state and then follow up test at 3 months and six months.
What is your message to those who might be affected by Hep C?
Get tested, get treated, get cured. Also in terms of advice to other people who might find themselves in a similar situation, push for your testing, either through a GP or one of our hubs. We now have a nurse at our hub, so the process is even better. Testing is the first step to getting your life back from Hep C.
Do you think there is a stigma? And how can we do better?
Hep C is something that not a lot of people know about it, so bringing awareness to it and its dangers, as well as how easy it is to get tested, would be a huge step forward into getting more people treated. Bringing awareness around how its transmitted, tested for and treated, would help to destigmatise the illness and therefore more people would feel comfortable to go and get tested. Additionally, there should be more training around how to test and treat Hep C within the hubs, so that when someone does come in looking to get tested, there is always someone ready and waiting to help.