My hep C hell
Sara Boxer, 49, feared she had malaria or a brain tumour, but it’s same virus that put her in coma in India 26yrs ago
I CONTRACTED hepatitis C when I was 22 but it would be more than 20 years before it was diagnosed. My nightmare began while travelling in southern India with a friend and I became ill with terrible migraines and nausea.
A doctor said I had a bug and to rest for a few days, but my condition deteriorated and the next day I was in hospital in a coma.
Medics began treating me for cerebral malaria, pumping me with drugs. I was in a back-of-beyond hospital having lumbar punctures and all sorts of stuff.
While I was unconscious, my friend Emma gave the doctors first aid kits we had brought from the UK. They had five needles in each pack but in 30 minutes the lot was used and so the hospital used their own needles. Though I didn’t realise it then, they must have been contaminated.
I was in a coma for a week as the medication slowly took effect. I was flown to Delhi for further treatment, then came home.
TIRED
I lost loads of weight and was admitted to hospital in London, under the care of a malaria team. I was discharged after a few weeks, given the all-clear after six months and got on with my life.
I got a graduate job but looking back, I was always very, very tired. I went on to marry Jon, a 49-yearold lawyer. I work as a legal administrator, we live in North London and have three kids – Louis, 17, Alex, 16 and Phoebe, 13.
Life was good. But four years ago I become really ill again, with similar symptoms to my time in India. I saw my GP, who thought I had a virus that would clear.
But I lost weight and suffered nausea, exhaustion and dizziness. My speech became slurred, I had terrible migraines and began to wonder if I had a brain tumour. I truly felt like I was dying. A friend of mine, a private GP, thought it could be menopausal. But she did a load of blood tests and was so concerned about my liver results she referred me to a hepatologist, Dr Patrick Kennedy.
He was surprised I had even managed to get to his clinic because the results for my liver function were so high. The figures should have been between 0 and 30 but instead they were in the thousands. It was clear I had severe liver inflammation. I had scans and a biopsy to identify the cause and that’s when I learned I had contracted the virus more than 20 years earlier. Blood tests showed I had contracted the rare hepatitis C genotype 3. I was asked if I’d done heroin, had a blood transfusion or a tattoo – some of the common ways the virus is transmitted. The answer was No. I’ve never met anyone who contracted it in the way I did – I was really, really unlucky. I was then told I didn’t have hepatitis C any more and was diagnosed with Autoimmune Hepatitis, where the body attacks your liver. I was given medication to control it. But
a year later, I was still really ill and the consultant repeated the biopsies, scans and blood tests. It showed I had full-blown hepatitis C, genotype 3.
The suppressants to control the Auto-immune Hepatitis had reactivated the virus, which is extremely rare.
Hepatitis C is like living with full-on flu. The worst part is managing your life, working out how to get through your day. I couldn’t live life to its full as I was always so exhausted. I had
debilitating migraines and aches and pains throughout my body. I became really depressed.
Eventually I was told my liver results were bad enough to warrant a new drug, sofosbuvirvelpatasvir (Epclusa). It is a single tablet taken over 12 weeks and I was part of a trial at the Royal London Hospital in East London.
I finished the course at the beginning of this year. So far, my blood results have been really good and although I’m still being treated for Auto-immune Hepatitis, I’ve been told hepatitis C should not return. I’ve managed to avoid cirrhosis of the liver, which hepatitis C can cause.
I know that in earlier stages of liver disease the organ can sometimes repair itself, so I’ve changed my lifestyle to be as healthy as possible. I’ve ditched sugar, have acupuncture and exercise daily. I’ve been told there is a chance my three children may have contracted hepatitis C but I discussed it with my hepatologist and until they start showing obvious symptoms, I’m not going to do anything.
Because of the negative connotations surrounding the virus, people simply don’t talk about it enough. Many sufferers I meet contracted the virus when they were addicted to heroin and don’t want to talk about it because it takes them back to a place in their lives they’d like to forget.
But it’s a horrible virus and we must raise awareness. Although NHS treatment is available, you have to be very ill with chronic liver disease before they consider you eligible. No one should be ashamed of having hepatitis C because it can be cured and you can get better.