I've worn contacts for 30 years. Decades of showering and swimming while wearing my contacts. Decades of rinsing them with tap water or using tap water if I ran out of solution. Decades of never being warned against the dangers of water and contacts. Ever.
On September 5, 2018 I awoke with a painful feeling in my left eye. I asked my partner if he saw anything in my left eye but he didn't see anything abnormal. The next morning I woke up with greater pain and decided to go to my optometrist and he thought that perhaps it was a scratch. To make a very long diagnosis short: It wasn't a scratch. I was finally diagnosed with Acanthamoeba Keratitis (AK) on September 11, 2018.
I had contracted this very rare, very painful, and very resistant parasitic eye infection and was shocked. Bluntly, I had welcomed a water amoeba to feast on my eye by exposing my contacts to tap water. As you can imagine, I was scared and questioned how this had happened. Why had no one - not even my doctors - told me how harmful exposing water to contacts could actually be?
According to the Centers for Disease Control, "Acanthamoeba Keratitis is a rare but serious infection of the eye that can result in permanent visual impairment or blindness. This infection is caused by a microscopic, free-living amoeba (single-celled living organism) called Acanthamoeba. Acanthamoeba causes Acanthamoeba Keratitis when it infects the transparent outer covering of the eye called the cornea. Acanthamoeba amoebas are very common in nature and can be found in bodies of water (for example, lakes and oceans), soil, and air."
Symptoms include: extreme pain, sensitivity to light, and excessive tearing.
Diagnosing AK is very difficult. My eye was scraped and cultures were sent off to verify AK presence. After a positive AK result, I was put on very toxic eye drops to be administered hourly. These drops are not FDA approved and therefore not made in the United States. They must be compounded or imported and is not covered by traditional insurance.The AK treatment is costly - not to mention daily/weekly doctor visits up to months and years. AK is also very resistant to treatment as the amoebas are able to transform into protective cysts upon sensing danger.
AK has greatly affected my quality of life. Looking outside on sunny days was painful for the first couple of months so I stayed in my dark living room all day. The pain is/was so great that I stayed on my couch with rotating ice packs. This is exactly how I spent Thanksgiving a few weeks ago. I can't tell you how many tissues I've gone through in the last several months but it's trees worth. While AK limits you physically it also negatively affects your emotional state. It's very difficult to be in pain for months on end and forced to exist in darkness day after day. They call it the "AK Journey" for a reason - it's a painful, difficult, slow, isolating journey that offers little predictability.
I'm in the third month of my AK Journey and I have a very long road ahead of me. I'm blind in my AK eye and I still have days of excruciating pain. I've just started being able to tolerate going outside in daylight but light sensitivity is definitely still an issue most days. I used to love sunny days and now I dread them. I'm still fighting AK (actually I'm still in the early stages) and continue to take 3 different drops multiple times per day. None of these are FDA approved and I still have to order from either the United Kingdom or Australia. My other drops are compounded locally. Some of these drops are actually diluted pool cleaners - and yes, it hurts. My pain comes and goes and it's unpredictable as AK has a mind of its own.
I have no idea where my AK Journey will lead me, how long it will take me to kill the hundreds of amoebas inside of my eye, if I'll ever regain sight, or if I'll need a corneal transplant down the road. Some AK survivors end up AK free and regain sight. Some survivors end up blind after fighting an AK battle and some lose their eye all together.
Please tell people my story. Warn them of the dangers of water exposure and contacts. Tell everyone you know that water and contacts do not mix. Never shower or swim in your contacts. Do not rinse your contacts or lens case with water. Spreading the word is key to prevention and this infection is 100% avoidable.