Tuesday, July 17, 2012

The Giant Reveal

This photo is special to me for two reasons.  First, because it was taken at the Mother's Day Brunch at my daughter's preschool, and we had a wonderful day together.  Second, it is the last photo taken in which I was normal.  Two weeks after this photo was taken, I started having issues with my left eye.  My eye was blurring and felt "tired" all the time.  I went to a local optometrist who told me I had allergies and he placed me on steroid drops.

Two days later, I just knew in my gut that I was not suffering from allergies.  I did some searching online and was horrified to realize that I had all the symptoms of a parasitic infection that is life threatening.  I called an opthamologist, explained my symptoms and they got me right in for an appointment.  I told them what I suspected and they assured me that such an infection is rare and I most likely had a bacterial or viral infection and started me on drops and oral medications.  Unfortunately, I continued to get worse and on June 16th, while at a martial arts tournament with my son, I lost all vision in the eye.

I woke at 3:30 am the following day in the worst pain of my life.  I called the opthamologist's office and they had me report to them for an emergency visit.  I had to wrap my head in a towel to get there as the pain from any light was excruciating.  When I removed the towel at the doctor's office my fears that I was in trouble were confirmed by the doctor's reaction.  He immediately called a specialist's office in Boston and told my husband that we needed to drive down right that moment.   Unfortunately, we had no time to find a babysitter for our 3 kids, aged 2 to 7 at the time and headed to Boston with all 3 kids still in pajamas and only the 2 diapers I had stuffed in the glove compartment.

At Boston, my worst fears were confirmed.  I did indeed have the parasitic infection,  Acanthamoeba keratitis.  It is a very aggressive parasite that eats and destroys the cornea of the eye.  If it manages to get through the cornea, the eye must be removed to prevent access to the brain.  The doctors in Boston felt I wasn't at that point yet and started me on a regiment of drops to try to stop and kill the parasite.  I had to use 7 different drops every hour, 5 minutes apart, 24 hours a day.

I eventually wound up in the ICU at Tuft's and had an emergency corneal transplant in an effort to prevent the parasite from entering my eye and having access to my brain.  We knew the transplant would fail, and I would need another one in the future, but I was happy to know that I was parasite free.  Unfortunately, I developed trauma induced  glaucoma as a result of the parasite and the toxic drops I had to use and a cataract formed.  In the spring of 2008, I had a second corneal transplant and had the cataract removed.  It was during this surgery that it was determined that the glaucoma had damaged the optic nerve and I had only shadow vision.  The glaucoma was also causing significant pain.  It would spike into the 60's and 70's and I would have to go and have fluid drained out with a needle.  I eventually had a patch and shunt implanted to drain the fluid out.  I had been on oral steroids for almost 2 years to prevent the transplant from failing.  In addition to acne, facial hair and a 60 pound weight gain, I also developed high blood pressure.  As a result, I hemorrhaged behind the eye and had to be rushed to the ER where they cut my eyelids to allow the eyeball to come forward and allow all the blood that was behind it to get out.

(Big black eye and "moon" face from steroids)

I continued to try and save my eye, but it took its toll.  I had to travel 2 hours each way a few times each month to go and have it checked, to have stitches pulled that had come loose, to get new prescriptions for ulcerations that would form on the surface.  I was in pain almost every day and it was affecting my ability to be the mom I wanted to be for my children.  Cosmetically, the eye was starting to wander and to shrink.  In August of 2011, I went for a visit with the occular plastic surgeon to discuss my options, and it became clear that it was time to end my struggle.  After breaking down and crying like a baby, I scheduled my enucleation for November 3rd. 

(November 5th, sporting my compression bandage)

My surgery went well and I was fortunate to have my parents willing to come and stay with us to help keep life as normal as possible.  I also had tons of support from family and friends and to this day I swear I healed both emotionally and physically so quickly due to all the prayers that were sent up for me.  I had to wait until mid December to go and have a prosthesis made.  Most people assume that when you have a fake eye, it is put in your socket when the real eye is removed.  It isn't.  A small implant is put inside your socket and either covered with your own tissue or that of a donor.  I had limited tissue that could be used, as there was so much damage, so donor tissue had to used.  The prosthesis is like a really, really thick, really big contact lens that fits over the implant.  I can take it out and clean it and then put it right back in. 

 (My new eye!)

The most common question I am asked is what does it look like without the prosthesis in the socket.  I did post a picture on my facebook page about a week after surgery of myself without the patch on.  However, I had in the socket a clear conformer which maintained the shape of my eyelids.  Very, very few people have seen me without anything in the socket.  This is going to be the big reveal!  

Its a lot less gross than most people are expecting.  It is still hard for me to look at sometimes, I'll admit that.  And neither of my sons will look at me when my eye is out.  In fact, it was my daughter who took these for me, when I took my eye out today to clean it.  I wanted to be able to show people that it isn't that bad looking, particularly people who are at the start of their journey with losing their sight and possibly choosing to have their eye removed.  
 First I slide the top of the prosthesis under my top lid.

 Then I pull down my lower lid and let the prosthesis settle before allowing the lid to slide back up.

 The paint job is amazing!  It matches the other iris exactly, as does the blood vessels they added.

I still may have some cosmetic work done.  The parasite and drops caused me to lose a lot of the fatty tissue so there is a noticeable difference when my glasses are off.  But for now, I am enjoying 6+ months of good health and no pain medications or drops or trips back and forth to Boston for medical visits.  Maybe next year I'll talk with the occular plastic surgeon about using some fillers and stitching up the lids a bit to match the other side.  Then again, maybe I won't.  


  1. Incredible story, and your strength and ability to take something so traumatic and turn it into something so positive is genuinely inspiring. You're beautiful inside and out, and your kids have one amazing mom.

  2. Wow, Kellie! Thank you so much for posting your story. It brought me to tears! I admire your strength and courage. You are an inspiration!

  3. You are so brave and strong, Kellie, and I am so glad that you came into my life when you did. Who knew that a shared love of a stupid television show could do that? We are all lucky to know each other and when I'm whining over something inconsequential, I have your story to remind me that I need to be grateful for what I have. You truly are an inspiration.

  4. Love your story Kellie. It really does show how strong you were and are, it gives me hope to continue to deal with the loss of my eye as time moves on. Thanks for writing here, I will really enjoy reading what you have to say. Jill (aka JillC' on losteye)

  5. Kellie, I am privelaged to have known you for more than 20 years now. You have matured into a more awesome person than you were back then! Your story continues to be an inspiration and hopefully will be able to help someone else. Stay well and God bless!

  6. Thank you for these photos. My husband's eye was lacerated and punctured in a car wreck 16 months ago, and he doesn't use a prosthetic, just tries to squint a little. He still has his eye, it looks like a wad of chewing gum. He wears glasses and got a pair with a tinted lens on that side.
    I wear contacts and I can't believe that those facts aren't more well-known! (from Rage Against the Minivan's guest article) thank you for sharing them.

  7. I don't know if you still read this blog but I'm so inspired. I lost my eye as a 5 year old and have grown up feelign lesser than I really am. This is such an inspiration to go ahead and fix my eye as I've been needing that push to actually do it.