When Amanda’s eye felt sore, she had no idea of the horror that was about to unfold.
Here, Amanda Eckersley, 45, tells the story in her own words.
T￼he wind was howling as I headed to my car. Just as I passed a building site, a huge gust sent grit right into my face.
Blinking it away, I didn’t think much of it, but that night when I took out my contact lenses, my right eye felt a bit sore. ‘It’s looking really red,’ my colleague said at work the next day. Over the weekend the pain got so bad I struggled to walk and I started to feel sick. A doctor said I probably had a cornea infection and prescribed eye drops. But over the next few days, my vision went blurry and I was so sensitive to light, all I could do was stay in bed in the dark. ‘I think I need to go to hospital,’ I said to my husband Andrew. There, an eye specialist took one look and knew. ‘I suspect you have acanthamoeba keratitis,’ he told me.
A rare disease, it’s caused by a microscopic organism found in tap water. The infection eats the cornea – the transparent cover of the eye – and if left to burrow, the amoeba can gnaw right through the eyeball. The grit must’ve scratched my cornea, I remembered.Then I probably showered while still wearing my contact lenses. I’d provided the perfect feeding ground for the parasite – and now it was attacking my eye! ‘We need to start an aggressive treatment regime to kill it,’ the doctor said. Immediately, I was admitted and toxic drops were used to burn through my cornea. Every hour, on the hour, a nurse put five drops in my eye a couple of minutes apart. Being woken throughout the night left me sleep deprived. And as the liquid seared a big hole, it was excruciating.Slow-release morphine helped for a bit but when it wore off, pain ripped through my jaw and across my head. Crippled by the agony, I rocked back and forward on the bed. Will I ever work again? I panicked.
Andrew had recently been made redundant and I was the main breadwinner. As well as two stepdaughters – Danielle, 19, who was away at uni, and Emma, 16 – Andrew and I had Lily, six. Free time was spent ferrying the girls to netball practice and I performed with a theatre group. Now my world had been reduced to a hospital bed and uncertainty.I look like I’ve got a zombie eye, I thought. After five days, test results confirmed I did have acanthamoeba keratitis (AK). A doctor mentioned partial blindness and cornea transplants, but I couldn’t take it all in. I just had to hope the drops stopped the infection spreading.
One day, I decided to go to the canteen for a coffee. But as I queued, anxiety bubbled inside me. I only had about 15 minutes before the morphine wore off and sunshine was streaming through the window. Completely overwhelmed, I raced back to my room where I saw my mum Sandie had arrived. ‘I can’t even get a coffee,’ I cried in her arms. My whole life had changed. After five weeks, I was to be discharged to continue treatment at home.‘How am I going to cope?’ I fretted to a social worker. My eye was closed and I couldn’t even lift my head. She arranged for a special pair of glasses to help with the sensitivity to light and a disability badge for my car, although I felt too terrified to consider driving.
When I finally went back to work more than a month later, I got some pretty eye patches off the internet. ‘Ooh I like your mermaids,’ the ticket inspector said on the train. After a few months, my cornea began to heal and my eye opened. It looked droopy but I still had a dark pupil. And with about 30 per cent vision, I could make out colours and see the girls smiling. I’m beating it, I thought. But then tests showed I had amoeba cysts, which meant the infection was lying dormant and I needed to start the drops again. They caused my eyes and nose to stream and my face was sore.‘I can’t go on like this,’ I said to my consultant. ‘Just take my eye out.’ The bug hadn’t attacked my retina though, so there was hope my vision could be restored. ‘There’s still something to save,’ he said.
Instead, I came off the painful toxic drops. Now my eye is so scarred, it looks white and I’m completely blind on that side. Because of the tissue damage, it’s impossible to know if the bug is still there. Scarily, it could start eating again, so I don’t know what the future holds. Despite that, I’m not going to let AK beat me. I use drops made from my own blood to help the cornea heal and eventually a cornea graft might be able to restore my sight. I also got a part in a show – exploiting my appearance playing a tough convict with a blind eye!
Before, I took my eyes for granted and I want people to know the importance of looking after them. More than a year on, I’m still on this journey. I’m stronger because of it, though. The bug might have taken my sight, but it won’t take my life.
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