Disclaimer The following case studies are from people whose lives have been touched by HCV. These people generously allow us to use their words because they believe that sharing their experiences might help others who are HCV infected. These stories may or may not be representative of the total HCV population and they do not necessarily represent the opinion of Tibotec. We hope that you find the case studies informative. Names have been changed to ensure privacy. I was diagnosed with hepatitis C somewhere around 1992, although I had probably actually contracted it some thirty years previously. At first it was a bit of a shock - as it is for most people - and I found I consciously ignored it until my subconscious got used to the idea. After that I decided to take a proactive approach and started to learn as much as I could about the disease, altering my lifestyle in the process.
This culminated with finally managing to give up alcohol and cigarettes, in that order though several years apart, as I knew they could be harmful and might exacerbate any liver damage. Conventional treatment was non-existent back when I was first diagnosed and, when the first treatment was identified, it was a lot less effective than today – consisting of monotherapy with non-pegylated interferon and no ribavirin. It was new and untested territory at that time, so I opted for a watch and wait stance. I have monitored myself carefully since diagnosis, and everything has been comparatively stable. I have been very lucky so far, having had four biopsies over the years since diagnosis which continue to show no fibrosis. My ALT/ASTs are consistently only just above the normal range although my viral load has been very high for the last few years. However, this being a systemic disease, I had been experiencing other symptoms that I believe are connected to my hep C, including irritable bowel syndrome, rheumatoid arthritis, headaches for days at a time, bouts of fatigue, cognitive impairment, brain-fog, mood swings, and declining eyesight. It is interesting how the attitude of doctors has changed towards symptoms.
For instance, there was a time when they told you “upper-right-quadrant pain” in the liver area was imaginary and that any “extra-hepatic” symptoms were psychosomatic! Unfortunately there are still some doctors out there telling their patients that, but in general things have improved. Although I am symptomatic, there is no guarantee that treatment would get rid of any of these symptoms, so I remain undecided. In fact, when pegylated interferon became available, NICE’s initial guidelines meant I was ineligible for treatment even if I wanted it, as I had no signs of fibrosis. When that changed in 2006 to recommend treatment for everyone regardless of the amount of liver damage they have, I still held off.
Over the years I have seen a lot of changes and major advances in the treatment available. But right now I don’t feel the need to do treatment. Of course, I realise that things may change – my liver might start deteriorating or my symptoms might worsen – and that could change how I feel about it. Finding out about my “dis-ease” helped me enormously on a number of levels and I want to pass that on to others out there who perhaps feel isolated or lonely and hopefully encourage them to accumulate more knowledge about their virus, so they can take appropriate action and make informed decisions regarding their treatment plan and lifestyle choices.
