Emily Leath, 26, stepped into the shower one day, not realizing that it was going to have a devastating impact on the rest of her life. Leath developed acanthamoeba keratitis (AK), a rare yet serious eye infection most often seen in contact lens wearers. It’s caused by a parasite—an amoeba—that is typically in large bodies of water (think lake or ocean) but can also be found in tap water, which is why you should never rinse or store contacts in water—or wear them while swimming, in a hot tub, or when showering. In the worst cases, AK can lead to permanent blindness or eye loss. Here is Leath’s story as told to writer Michelle Vartan.
In the summer of 2022, I was in Florida visiting Disney World for a few days. I took a shower one evening, as one does. When I got out, I removed my contact lenses, and put them into the case with the recommended wetting solution before going to sleep, just as I had done many, many times before. This was really no different from my typical nightly routine, which I had been doing since I was 12 years old. Up until this point I had never heard there was any danger associated with taking a shower with contact lenses in.
The next morning I woke up with pain in my left eye. At first, I wasn’t worried because I had had corneal abrasions in the past (a scratch on the clear outer covering of the eye) and this just felt like a bad case, so I made a doctor appointment and was given routine antibiotics. But two days later, my symptoms were worse. The best way for me to describe it is like a shard of glass stabbing your eye, repeatedly over and over and over. I became sensitive to light, had to wear sunglasses, and stayed in a dark room. My family took me to the ER where I was diagnosed with a corneal ulcer (a bigger wound than an abrasion) and received antibiotics yet again. Even though I was doing eye drops every hour my pain somehow was ramping up.
I then went to a corneal specialist, which was actually a terrible experience. The doctor scraped my cornea to do a culture and see what was attacking my eye. You can’t imagine the pain. I was bawling when she said to me, “You need to stop crying. You’re acting like an adult baby.” I will never, ever forget it. It was so invalidating. I asked to see another specialist. This new person, who was much warmer, came in and diagnosed me with acanthamoeba keratitis (AK). To this day, I am grateful to her for suspecting AK, because people can actually be misdiagnosed for months or even years, and early treatment is vital. (And I’m so glad I spoke up and asked for alternative care!)
I left the clinic upset and confused. I didn’t know what this condition was or what to think. After online research, I learned that a tiny living amoeba can embed itself in microscopic abrasions in the eye, including ones made by contact lenses. Based on what I read, I completely panicked. All I could think was, Oh my God, I’m going to lose my eye. It was the scariest feeling, especially because I already have anxiety.
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I was prescribed an eye drop called chlorhexidine, which I had to use every hour. Days later, my eye was increasingly puffy and red, and somehow even more painful. I found a new corneal specialist who had successfully treated AK in the past—Timothy Chou, MD out of Stony Brook University Hospital, New York. He was great, made me feel like my symptoms were valid, and ended up treating me through my entire journey. My eye drop regimen quickly morphed into a medication cocktail (including chlorhexidine, PHMB, and Brolene, which are other eye drops prescribed for AK). I was on so much medication that I had a stack of papers with lists and schedules. I had to do eye drops every hour and wasn’t getting much sleep. I was so tired and [drained] of my alarm going off.
The thing is, it’s very difficult to kill these amoebas because they can go dormant in the form of cysts that are incredibly resistant to treatment. There is limited literature on AK, so my doctor was constantly researching and basically throwing the medical version of the kitchen sink at it.
This went on for months, and the meds, exams, pain, isolation, and social embarrassment continued to evolve. It was challenging to talk to people because I felt like everyone was looking at my swollen-almost-shut puffy red eye. At the time, I was in a nurse practitioner program. I continued taking classes because it gave me the motivation to keep going, but it was difficult. I was too embarrassed to wear an eye patch, so I would sit in the back with my hand over my eye thinking, Just get through it. And when I wasn’t in class, I just lay on my bed with a heating pad on my eye. I was in the dark for six months, both literally and figuratively. I couldn’t do anything that exposed my eye to light—so I couldn’t go outside or to the gym or do anything I loved. I struggled with depression before this happened, so this was especially hard. At one point, I joined a Facebook AK support group; it really helped me remember I wasn’t alone during a time that felt like a lonely, isolated hell.
I didn’t think the pain could get worse until one day in December. We weren’t sure if it was a bad reaction to a strong new medication or a natural evolution of the infection, but the pain soared. I was actually laying in bed screaming it was so painful. It felt like it was an actual living nightmare. After being admitted to the hospital for pain management and put on a pain pump, I decided I just couldn’t take it anymore. Up until this point, we had tried everything and it was hard to believe that we weren’t able to kill the amoebas, but I knew it was time for my most extreme option. I decided to move forward with a corneal transplant. I was proud of myself for fighting the good fight for as long as I did. It was so hard that the eye surgery no longer felt scary; it was necessary.
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A corneal transplant is where they replace your own cornea with one from a donor. For pre- and post-care, I had to go on an antiparasitic IV medication called pentamidine. It’s similar to chemotherapy in that it makes you very nauseous; I was constantly throwing up. With the combo of this drug and my anxiety I ended up losing 25 pounds over the course of a few months. I didn’t recognize myself in the mirror.
I got the transplant in January and went home to recover. The pain subsided but I was devastated when it was only temporary. One day, the same familiar stabbing pain was back. This is when the conversation with my doctor got really scary. He told me the infection may have spread into my sclera, the white part of your eye. This is rare, but with my track record, of course it happened. At that point my options were to do one more transplant. If that didn’t work, he told me they’d have to remove my eye. My heart dropped into my stomach. It was the worst feeling I had ever experienced. I could tell he was uncomfortable delivering the news and I couldn’t blame him, who the hell wants to tell their patient they may lose an eye? I spiraled. I began to look up prosthetic eyes in an effort to accept a terrible reality. In February, I went in for the second transplant. This time my doctor saved my eye with a deeper cut and applied cryotherapy (for freezing parts of the eye).
You’d think the relief would be overwhelming but I could only feel more angst. I was afraid to start living again because I was waiting for the other shoe to drop. I was constantly monitoring my pain. I was terrified of water—a sprinkler would go on and I would freak out. I even showered with my goggles on. I was anxious, worried, and depressed. I religiously continued to take my medication, which thankfully was a lot less post-transplant. It took time for the dread to fade. I remember my first outing was in late March, almost a year later after my original diagnosis.
Today, I’m a different person physically and mentally. Not surprisingly, I mostly wear eyeglasses. You can tell there’s something going on with my left eye; it doesn’t quite match my right one. I have brown eyes but my left one has a ring of white-ish blue around it due to the corneal transplant. It kind of looks like I have a blue eye. I now see Dr. Chou every six months and just use a daily eye drop (which I will be on forever to help make sure my immune system doesn’t attack the donor cornea). Throughout this process, I had to say goodbye to who I used to be; my self-confidence plummeted and it’s been a work in progress building it back up. I now see a therapist who specializes in people with chronic health conditions and they increased my anti-anxiety meds. I am in a much better place than I was a few years ago. I am now at the point where I don’t feel like I have to wear goggles in the shower. On rare occasions I’ll even put my contacts in (but of course, never wear them in the shower!) and to me, that is a victory.
Many people don’t understand the life-changing risk that could come with one shower or one dip in the pool with contacts in. We have a tendency to think we are invincible, to think, That’s so rare, it’s not going to happen to me. I wanted people to shift that mentality so I turned to TikTok to tell my story. Some of the people who have commented on my social media posts have said that they used to put their contacts in water instead of lens solution, and now say they’ll never do that again. It’s so important that contact wearers know about this condition. I hope that maybe I can save a couple of people a couple of eyes.
So please, don’t use tap water for your contact lens solution. Don’t swim with your contacts in, and please please don’t shower with them, I’m begging you.
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