Real story: Fiona’s story
I was in my early twenties in the late 1970’s when I gave blood for the first time. Soon afterwards I had a letter from the blood transfusion service saying “your blood has recently been found positive by tests to identify a healthy person whose blood may transmit hepatitis”. I was ignorant of the significance of having hepatitis and thought no more about it until 1993 when I had blood tests for something unrelated and the doctor said I had hepatitis B, but inactive. I don’t how I contracted hepatitis. I hadn’t done anything I was aware of that put me at risk – all I can think of is that I had my ears pierced as a teenager, I’d spent a bit of time in hospital as an in-patient, and like everyone else I’d visited the dentist.
By 2010, I was married with a teenage son and generally healthy and clean living, but in June that year I suddenly felt poorly. My husband and I had been to play golf and I felt well and enjoyed the game, but the next day I was really stiff and that stiffness didn’t wear off. I went to the doctor and saw a locum GP, but she was very good. She was surprised things had been allowed to drift for so long as if the hepatitis was entirely benign and ordered a load of blood tests.
Amongst other things the tests showed a slightly raised level of AFP, the tumour marker. I was referred to a consultant at my local hospital. The consultant arranged a CT scan of the liver as he suspected any tumour might be small and difficult to detect by ultrasound, given the fairly small rise of AFP. The CT found something in the liver, but it was not clear if it was a lesion, a nodule, or a tumour. So I went for an MRI scan that showed a peripheral tumour of just over a centimetre in size. The consultant discussed the results with a liver surgeon at our regional specialist unit. Between them they decided the tumour could be removed surgically, and that it could be done via laparascope, or keyhole surgery, for a quicker recovery. For the surgeon to get a better idea of the condition of the liver around the tumour I had a Fibroscan, which suggested I also had cirrhosis. Things progressed quickly and in September 2010 I had a liver resection. A biopsy of the tumour showed it was a hepatocellular carcinoma (HCC) but that the surrounding tissue was clear of cancer cells.
The surgeon said my liver was generally in poor condition and confirmed that I have cirrhosis. I was surprised; I thought cirrhosis was something that heavy drinkers got – and I have always been an infrequent drinker. My understanding is that the hepatitis virus damages the liver while your body tries to clear it from your system. The longer the clearing process, the worse the damage. In my case, the hepatitis took a long time to clear and that caused a lot of damage. The damage can’t be reversed apparently but I have changed my diet to look after my liver as best I can, cutting out fatty food and adopting a teetotal lifestyle.
Four months after surgery I still get tired easily, and still suffer with excessive stiffness after exercise. I go for short walks to try and stay fit. I’ll have CT scans of the liver every 6 months to check for recurrence of cancer and blood tests to check AFP levels and liver function every 3 months at my GP.
I have wondered if anything might have been done earlier to keep my liver healthy, particularly when I was first found to have hepatitis. Nowadays anti-viral drugs might be prescribed to clear the virus, but in the 1970s these hadn’t yet been developed.