On Nov 3rd 2010 I was asked to speak at a banquet for doctors and nurses who are involved with transplants and organ & tissue donation. It was to show appreciation for the work they are involved with and to show them how it dramatically changes lives. This is my story......
Saturday, September 11, 2010
Ok So I'm a few days late. My official 1 Year post transplant day was September 8th! I can't believe its been a year already. I thought I would keep this blog updated more often, but I really didn't have much to talk about. My transplant has gone absolutely fabulous! Well...a few minor glitches but nothing serious. Around January I got my first couple stitches removed from my eye and it immediately changed my vision for the better. However, it made me EXTREMELY sick! I was so dizzy that I actually fell on the floor after my appointment. And in those next few days I had horrible headaches and I then noticed that I had severe double vision. Anyways, long story short I had to see a specialist at the hospital because my regular cornea specialist was away and he told me that I had "double-double vision". I have double vision because the stitches make my vision all wonky, and then I also have another double vision because when I couldn't see out of my left eye for 3+ years my eye got lazy and turned outward. Well since the transplant it still is turned outward and has not gone back to looking straight forward. I also have permanent iris and pupil damage from the AK infection. My pupil doesn't dilate/constrict anymore which makes me have a lot of headaches. I'm not sure what I was wanting the doctor at the hospital to do or tell me but he had about 4 or 5 other people come have a look at my eye and NONE of them had any clue what to tell me. I'm such a rare case because of the double-double vision. Nobody had ever seen a case where there were two reasons for the double vision. Anyways, after these 6 people poked at my eye for 30 minutes they came to the conclusion that I would just have to live with it. I am only 24 years old. For someone to tell me I will just have to live with double vision, headaches, nausea etc was devastating. Fortunately though, the brain and human body are amazing things. I adapted and although I STILL have double vision, its almost like my new "normal". I hardly even think about it anymore! Reading is hard, and trying to focus on certain things are hard sometimes but overall its ok. Although I would be lying if I said it didn't bother me at all. Because sometimes I just break down and LOSE it because I get so frustrated with my eye always moving up and down trying to focus. But then I get over it and move on because...well....I have to. Nobody else around me knows what I go through and see, and honestly, nobody wants to hear me whining about it! So other than those few things, I feel like my transplant couldn't have gone better! As of today I only have 4 stitches left in my eye and my next appointment is Oct.28th. On that day I will get the last 4 stitches out and then hopefully I will only have DOUBLE vision instead of double-double vision! And I will also then get to see what my vision will really be like post-transplant. I am really excited for my next appointment because it will be the end of this transplant journey in a way. Although I'm not quite out of the clear yet. Not even close.....
Which brings me to my next update: more surgeries. The following is my list of potential surgeries in my near or distant future:
1. Laser eye surgery. I am 99.99999% sure my vision will not be what it used to be after all of the stitches are out of my eye and I really don't plan on wearing contacts in my left eye ever again. So laser eye surgery is definitely on the list of surgeries needed.
2. Strabismus surgery. The Strabismus muscle is the muscle that runs just along the outside of your eye. Since my eye has gotten "lazy", they may have to do a surgery where they cut the Strabismus muscle so the eye looks straight forward again.
3. Artificial Pupil Implant. At my most recent visit to my doctor I had mentioned to him that I am still really quite sensitive to light. This is because during my AK infection the parasite ate all the way through to my iris and pupil. Now my pupil is permanently scarred and does not dilate/constrict, therefore causing me to be very sensitive to light, which equals frequent headaches! Fun! Anyways, my doctor said that I may be able to get a surgery where he puts in an artificial pupil! How crazy is that?! Before we go this route though, we are going to try a few other non-invasive treatments first.
4. Cornea Transplant. Unfortunately, cornea transplants don't last forever. And since I got my Cornea Transplant so young, chances are I will need to get another one in this lifetime. But this won't be for many years!!!
I remember when I first got the Acanthamoeba Keratitis infection and my doctor said to me "We are going to be seeing a LOT of each other". I thought ya ok, i'll have to come see him for the next couple months, no big deal. WRONG. I'm finally coming to the realization that I will probably be seeing my doctor every couple months for the rest of my life. And of course more frequently during those other potential surgeries.
I will try and be better at updating here! Especially once I get the rest of my stitches out! Still cannot believe its been a YEAR! WOW!!!
Thursday, September 2, 2010
Just wanted to do a quick note today. I will do a complete update Sept 8th which will mark my 1 year post transplant anniversary!! But today I just wanted to do a post to honor my transplant donor who passed away a year ago. Not a day goes by that I don't think about them, and I feel so incredibly lucky that (one day!), I will be able to see again. So all of you people who haven't signed their organ donor cards.... DO IT. My donor changed my life forever and I will always be incredibly grateful for their selfless gift of sight.