Last night was rough. I managed to take a shower before bed, which wasn't as hard as I first thought it might be. I washed my head, ears and neck in the sink and used baby wipes on my face. While in the shower, I didn't have any problems keeping my eye closed tightly enough to keep the water out. Sleeping, though, was a different story. Even with the Tylenol, I was in a lot of pain trying to sleep. I could not adjust my plastic guard so that it wasn't hitting my eye lashes ( I have long eyelashes for a guy) and so I was constantly irritated. Under my eyelid, all sorts of things seemed to be going on. Itchy, scratchy and twitchy. There were throbs of pain now and again, and I found the only relief was when I kept absolutely still and tried some mediation techniques to take my mind off the pain. In this state, I kept having strange thoughts as if my eye was actively trying to reject my cornea while I lay there. It was quite horrible. After an hour, I did get to sleep. Woke up at 4am, put my drops in and slept for a few more hours.
Let me just say that I think there were a number of things that contributed to last night's pain. I had been out and about a couple of times that day, and so my eyes were moving all around in direct sunlight, being agitated. I also had a large cup of coffee in the middle of the day which I think made me hyper-sensitive. Not a good idea.
Today things have been much better. Both eyes are sensitive to light, but I have been taking it easy and resting between working. I actually managed to work for a full day today going at my regular pace. It most certainly helps that I work from home on my computer. I can't say how lucky I am there. I would hate to have had to take off work for several weeks for this.
By the way, for those who don't know me. I'm 40 years old, and no, I don't know who the donor of the cornea was. I simply call him Pablo (might as well have fun with this). Apparently, there is a cornea bank in the US so I did not need to wait for a donor. In fact, I think these operations are becoming quite common, and I don't think anyone has to wait. Another big advantage.
I wanted to post a picture of my eye for those who want to see, but I don't want to link it from FaceBook as some people might find it pretty disturbing. Yes, it is pretty gross but also fascinating. You can see the ring around my eye where the new cornea was placed, and the stitches. Compared to other recovering DALK patients, my eye looks about normal if not a little better that most.
I'll go over my eye drop routine. 4 times per day I take a drop of Durezol (steroid), Vigamox (anti-bacterial) and some over-the-counter wetting drops called Optive. The only one that is tough to take is the Vigoamox. Stings like hell. Hopefully I only have to take that for a month or two. Aside from dark places to hide, another thing that sometimes helps is just stretching my eyelid up and pulling down on the skin of my cheek. Not sure why that is, but it just feels good. Careful not to touch the eye though.
The milky haze has gone from having a yellowish tint to a more clear tone. Everything is still rather blurry, but I thought it was incredible walking around my house with just my left eye open. I could make out colors and shapes very easily and could even read some of the print on the television while standing in the hallway. I find that when I really strain hard I can make out a good deal more, but when I do that it is usually followed by a dull ache in my eye. So...just going to give that a rest for awhile.
All things considered, I think it's turning out pretty well. After reading other DALK patient blogs, I know I have a tough road ahead of me filled with a lot of ups and downs. But already, I see better. My new strategy ongoing is to lay off the caffeine products and start taking the Tylenol in the evening, so that when I'm ready for bed I can actually get to sleep.
More to come....