Please Learn From My Acanthamoeba Keratitis Story

Since April is National Donate Life Month, I thought I’d share my pretty remarkable story of how I contracted a horrible eye infection called acanthamoeba keratitis, (I’ll do you a favor and call it AK for short), went blind, nearly lost my eye and then regained sight through an organ donor. The little monsters invaded my eye in 2007, but even today, I’m still dealing with the awful aftermath of AK. In case you aren’t familiar with AK, it is a very serious, rare and incredibly painful parasitic eye infection. In most cases (like mine), it occurs in contact lens wearers, but it can also occur in non-contact lens wearers as well. Acanthamoeba can be found in all types of water, soil and dust. It can even be found in HVAC systems and humidifiers. No one is immune. Your doctor could get it just as easily as your toddler. AK is difficult to diagnose and even more difficult to treat. Fortunately, I am an AK survivor and have a pretty amazing story to go with it.

It all started on Mother’s Day eight years ago. I wasn’t a mother yet. I wasn’t even married. I was 24 years old and working as a coordinator at a university. I had just bought my first home and was living with my fiancé. It was the first time I had lived anywhere besides my parents’ house, and I was enjoying my newfound freedom and independence. All my extra time was spent wedding planning and getting yelled at by Jillian Michaels. On Mother’s Day that year, I was out shopping with my mom and I kept getting the annoying feeling that there was an eyelash in my eye, but when I looked in the mirror, I couldn’t see anything. “Weird,” I thought, but I didn’t think much of it.

Several days passed and the “eyelash” kept getting more annoying. The white part of my eye was beginning to turn red, but I kept living my life and going to work like normal, although I decided to stop wearing my contacts and began wearing my oh-so-sexy glasses again. I had my annual review at work and was promised I’d receive a promotion soon. I was overjoyed! I couldn’t wait to tell my family the great news (I was having dinner with my parents that evening), but on my way to my parents’ house, I could hardly keep my eyes open. The sun was brutally bright and causing my eye to water like I had just finished watching “The Notebook” for the first time. It is a miracle I made it home safely that night. After looking at my eye, my mom convinced me to go to the emergency room. She took me in and we waited for what seemed like an eternity for my name to be called. At least “American Idol” was on in the waiting room to keep us occupied. I finally was seen by a doctor, who I swear was Napoleon Dynamite’s doppelgänger. Although he was amusing, he was no help to me. He referred me to an ophthalmologist (“Dr. S”) who would see me the next day.

After Dr. S closely examined my eye with her phoropter (the fancy shmancy eye machine shaped like E.T.’s head. You know the one.), she said she was pretty certain I had AK. I had no idea what AK was. I couldn’t even pronounce it correctly. Honestly, I was in denial. I thought I just had a really bad scratch in my eye from my contact lens or something. Dr. S told me I may have a serious eye infection and I needed to go to the University of California, San Francisco (UCSF) immediately to have a culture taken by their team of doctors. At that point, I was in disbelief and totally freaking out. I asked her if I was going to lose my eye, and she said she didn’t know. I began crying. My mom began asking Dr. S a ton of questions she simply couldn’t answer without a confirmed diagnosis. I know my mom was scared as hell, but she put on a brave face for me and drove me to San Francisco. One of us had to be strong, and it sure wasn’t going to be me. I was a mess of emotions. The thought of losing my eye and never being able to see my own children is what really got me.

The doctors at UCSF knew I was coming and were prepared to get a culture from my eye right away. They numbed my eye, pried it open with teeth-like jaws and literally scraped (Yes, scraped!) my eye with a sharp tool. They put what they found on a petri dish and told me it would be at least three days before they would know the result. Great. More waiting. All I could do was cry, curse and cup my eye with my hand the whole way home. That one-hour-long drive home felt like four. I was in complete agony. I stayed at my parents’ house that night. (Little did I know, I would be moving back into their house that summer. So much for my newfound independence!) My eye was in so much pain. Any kind of light was blinding to me, so all I could do was lay down in the darkest room in the house and try to get some sleep. I kept praying I didn’t have AK, but it was too late. That night, my mom got the dreaded phone call from Dr. S. The AK in my eye was so incredibly bad, the doctors were already able to identify it in the petri dish. What was supposed to take at least three days took merely hours. Crap.

Thus began my three months of living hell. I was prescribed four different types of drops to use in my eye, two of which were extremely toxic. Dr. S compared it to putting bleach in my eye. Although the drops would help get rid of the awful living parasites, they would ultimately cause me to become legally blind and turn my once beautiful blue eye into a clouded dull blue “wizard’s eye.” Every 15 minutes, around the clock, a drop was going into my eye. I was getting little sleep. My mom had become my sole caretaker again.

That entire summer, I was literally in the dark. While my friends were going to beach parties during the day and clubs during the night, I was stuck in my dark, depressing and lonely cave. The only time I went out that summer was for doctor appointments, which averaged about three per week. I had to wear huge specially ordered dark sunglasses for me to even step outside without my eye watering. Heck, I couldn’t even watch TV without those sunglasses. At my doctor appointments, I’d have more eye exams done and worst of all, more scrapings. I hated those more than anything. (As someone who has given birth completely drug-free, I can honestly say I would rather go through childbirth than to have my eye pried open and scraped again.) Along with the awful regime of drops going into my eye every 15 minutes, Dr. S tried other treatments. An eye drop serum was made from my own blood, which required 16 vials the nurse took from my arm all in one sitting. (My mom said she had never seen my face so white before.) At one point, a membrane was inserted into my eye. That hurt worse than the scraping. I know Dr. S numbed my eye before the procedure, but I swear I could feel everything. Every friggin’ thing.

Alas, this story does have a happy ending. In the words of Gloria Gaynor, “It took all the strength I had not to fall apart.” As difficult as it was, I never fell into depression. I remained positive. For myself. For my mom. For my fiancé. For my future children. I survived. In August 2007, Dr. S confirmed the treatment worked and the AK was finally gone. You can imagine the relief I felt! However, like I said before, while the drops I had to put in my eye got rid of AK, it left me blind in my right eye. (Rumpelstiltskin wasn’t kidding when he said, “All magic comes with a price, dearie!”) My vision resembled a frosted shower glass door. I moved back into my house with my fiancé (Yay!) and went back to work. I never did receive that promotion. (Apparently, being on necessary medical leave is frowned upon.) I wasn’t going to put off my wedding any longer, so I went ahead and got married the following August, one year after being AK free. That’s right, people. I was a one-eyed bride! OK, it wasn’t that bad. I actually looked pretty amazing. I did have to spend $300 on a special contact lens that matched the color of my left eye though, but feeling beautiful on my wedding day was definitely worth it.

Four months after I became a Mrs., I finally had a successful cornea transplant. Because my nightmare had a happy ending, I became somewhat of a celebrity in my hometown. In January of 2010, a journalist from the San Jose Mercury News interviewed me and wrote an article about my story. A professional photographer came to my house and took photos of my baby and myself, which were also published in the newspaper. I was even selected to ride in the 2010 Rose Bowl Parade on the Donate Life float, which was a pretty awesome experience and not an opportunity most people get. I thank God every day for my cornea donor. I am proud to say that I am now signed up as an organ donor as well and I encourage you to sign up too.

Fast forward to today, my eye has great vision and is back to its natural beautiful blue. (I’m no longer a wizard, Harry!) To prevent my eye from rejecting the new cornea, I have to use steroid eye drops for the rest of my life, which Dr. S said will eventually result in a cataract, but like I said earlier, “all magic comes with a price.” I still have regular doctor appointments with Dr. S because it is crucial she makes sure my eye is not rejecting the cornea. I am pretty much married to Dr. S at this point. There have been a couple of scares, but so far, so good. She has done an excellent job of keeping my eye on track (or shall I say in tact). Thanks, Doc!

So how has AK affected my life now? Well, I choose to never wear contacts again, and I will never allow my children to wear them either. They can beg me and whine about it all they want. It’s not happening. I will never open my eyes in any kind of water, whether I am in the ocean, a swimming pool or under my shower’s spout. (I don’t mind. I just look like I am really enjoying my shower, which I am. I have two kids under the age of 6. You moms know how it is.) When my kids go swimming, I make sure they have goggles on. I even make them wear goggles when they are playing with water guns and water balloons.

You might think I am paranoid, and do you know what? You are absolutely right, but after living through the hell I went through, you would be to. What I hope you take away from my story is this: Don’t take AK or any other kind of infection lightly. Don’t think it will go away on its own. Don’t wait until it is too late.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.