I was diagnosed with non A/non B hepatitis back in the 80s but felt pretty well so did not get too concerned. In the early 90s I noticed I was lacking energy and had a vague sense of something not right with me.
I eventually sought medical help and thankfully my GP referred me to Chelsea & Westminster Hospital where I learnt I had Hep C, an enlarged hepatic vein and signs of early fibrosis. This felt like a relief as I then knew I wasn’t malingering and had a challenge to face.
Then came the bad news that there was no recognised treatment. I was also told to be careful whom I told about my disease as I could be ostracised and shunned! Thankfully I ignored this advice and informed all and sundry that I was Hepatitis C positive and fortunately found others also in the same boat.
Soon after this, back at Chelsea & Westminster Hospital, a specialist Hepatitis C nurse was allocated to the Gastroenterology unit. He was a terrific guy called David, who told me about new drug trials with interferon and asked if I would be willing to participate. The carrot was that if I did the trial, the drug company would pay for my course of treatment.
Looking back, I did not think about any possible risks as I felt glad to be doing something, rather than witnessing my slow decline in to ill health. A year later I was in a private hospital, with a cannula in my wrist, and being given interferon and ribavirin; feeling like a guinea pig, as bloods and fluids were being monitored very regularly. This trial was short lived and bearable. Then, I felt like I’d won the lottery as I was given the go ahead for an initial few months of treatment, subject to review.
I found taking interferon and ribavirin a difficult experience to translate to anyone not familiar with long term flu!
It was like walking into a tunnel and the light at the tunnel mouth gets smaller and smaller till even that pinprick of light disappears, then it’s just darkness but my feet are still walking and eventually a new pinprick of light appears at the journeys end!
Whilst in the darkness I was told the treatment was working so they would keep me on it for a year to ensure success. At the end of treatment I felt more like Gollum than Mary Poppins, but also a sense of satisfaction that I had cleared the virus. The non-existence of support groups at the time encouraged me to get more actively involved and I attended many of the fledgling start ups in the late 90s.
In hindsight, I would say that taking the treatment was a life changing event. I had no idea how much I was affected by my hepatitis in terms of lethargy, subtle depression, lack of ambition etc. Post interferon I re-evaluated my life and took a degree in Art and embarked on a different career. I have travelled, read more, and just generally appreciated ‘life’ more as a full human experience. After five years going back and forth to Chelsea & Westminster for follow up tests, I was told not to come back again as I was no longer considered a patient. At first I felt disappointed, but quickly started to smile as I knew I had my life back.