Wednesday, September 5, 2012


This blog is mostly going to be for my fellow Acanthamoeba Keratitis people from now on as I think they may be the only ones reading it. Since my last post not a whole lot has changed. My transplant has been perfect and i've had no issues. However, I still also cannot see properly. I'll explain what happened since I can't remember if I did or not before. So when I had AK it was REALLY bad and my cornea scarred up so I couldnt see anything (it looked white). Then I had to wait 3 years on the transplant list (using only my right eye) and my brain kind of went, "well! I can't see anything out of the  left eye so we will just ignore it and basically shut it off". So my brain pretty much just interpreted images from my right eye and ignored the left. My left eye turned out (like a lazy eye) but at the time I couldn't really tell that because it was all scarred up and white. Then I got the transplant (so i could see again!) but then I realized my eye was turned out. This causes me to have double vision. Yes, ALL the time. How do I drive? I don't know, I just do. Its easy to tell what is real and what isn't. However, when I wear glasses or contacts in both eyes it is WAY too hard to tell so I just don't wear anything for my transplant eye. Anyways, my doctor thought that maybe once my brain got used to the transplant again it would turn back out. Well, its been 3 years now and nothing has happened. We have tried everything to make it turn. Glasses, name it! Speaking of contacts....I also cannot have normal contacts anymore as they won't work for my transplant. Since after you get a cornea transplant its not completely smooth on the surface (or at least mine isn't), you can't wear a normal contact because it doesn't lay completely flat. So I had to get a "special" contact that they made from taking exact precise measurements of my eye. Its pretty crazy they can even do that! Anyways, when I wear it I can see! Which is awesome! The not so awesome part? ONE contact is $800! Yes you read that right. Just for ONE. So I'm hoping one day I can get laser eye surgery....BUT one step at a time. Its so funny that this one thing my doctor told me when I was first diagnosed has really stuck with me. He said " Acanthamoeba Keratitis is a LOOOOOOOONG journey and its going to take a long time to get better. " At the time I was like, oh yeah like a year thats going to suck. I am....SIX years later still dealing with it! Not even close to the end! Seriously. I would not wish this upon anyone. Anyways, as of right now, I only wear a contact in my right eye (not my transplant) and I have constant double vision. Super annoying. So in a month i'm having Strabismus surgery to fix the double vision! I'm really excited. Cosmetically it will look better, and the bigger outcome is no more double vision! I don't even know what that will be like. It will be so weird to be able to see with TWO eyes again. Its been six years! Thats a long time! So I want to know if any of you AK people have ever needed Strabismus Surgery after AK? Usually its only a surgery that children get because they are born with a lazy eye. I guess its rare to develop it (especially in adulthood). Obviously mine is due to special circumstances. So for those of you who don't know what Strabismus Surgery is, basically they are going to hold my eye open and either cut my eye muscles or pull and sew them depending on which way it needs to go. I *think* they will be cutting mine. Sounds like it won't be fun especially because you have to be awake, BUT nothing will be as bad as the transplant and having to be awake for that! So anyways, thats whats going on with me next! I'll do another update when the surgery is done. Its on October 5th :)