My Transplant Speech

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......

1 Year Post Transplant!!!!!

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!!!

Almost a year

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.

1 Month Post-Transplant

Well, it's been 1 month post transplant today! What a mile stone! And so far its been great! I did go to work for 3 days but it was just too much. So now i'm just resting until probably November. No complaints really, my eye looks FANTASTIC and I don't feel the stitches hardly ever. I feel very very lucky. The only complaint I have is I have a headache almost all the time. Sometimes it is quite bad but now that i'm not working I just have a nap when I get them and sleep it off. Hopefully they don't last long! Although I have a feeling they will because I have my double vision still. My vision isn't really improving much more, I think its at its limit for now until I get the stitches out in 6-12 months. Anyways, just wanted to do this quick update! I go to the doctor again Oct.28th so I probably won't have any new news until then!

3 Weeks after Transplant....

Sorry I haven't wrote in a while. I went on a little vacation to Fairmont last week with Kevin, then finally came home to my own house (not my parents) and I'm just settling back in with my new cornea. So tomorrow marks my 3 week mark! Everything is really great. It looks awesome and I can still see a lot (not as much as my other eye but a HUGE difference from what it was). Tomorrow I am also going to try go back to work for the first time. I'm only going for 3 hours so hopefully it will be ok. For those of you who don't know me I am a massage therapist and I also have a job doing mostly graphic design / computer stuff. I cannot massage for another month but i'm doing the graphic design / computer stuff tomorrow. Dr. A also said I can drive now so tomorrow will be the first time I drive anywhere too! So a big day all around. I'm going to keep this short today as I have had an awful headache all day and just feeling a lot of nausea. It's from my eye so I think I'm just going to go to bed early tonight!

Happy Birthday To Meeee

Hey everyone! So not much new to report again. My eye is starting to get used to the stitches rubbing on my eyelid but it is still quite painful. I've been taking a Tylenol 3 or two everyday and I'm still keeping up with the eye drops. Other then that everything is good!

Since today is my 24th Birthday and that I received the best birthday present anyone could wish for this year I thought I would take a full face picture today of my eye! So watch for the picture later......

1st Post-Op Appointment

Well, today was my first post-op appointment with Dr.A. He said everything looks GREAT. He said he really like how everything is healing. Then he said he wanted to take off the contact bandage lens, which I wasn't too keen on. But he said if it was too irritating he would put it back on. So I said ok lets do it. So with NO freezing eye drops or anything he took tweezers and told me to hold really still and he pulled the contact out of my eye with the tweezers! Soooo weird! But surprisingly it wasn't as bad as I had expected. However, now that I'm home it is VERY irritating. The stitches are rubbing my eyelid now and it sometimes does hurt a lot, but mostly it feels like I have a piece of glass in my eye rubbing on my eyelid. Ouch!!! Hopefully i'll get used to it soon- I don't really have a choice! These stitches will be in for at LEAST 6 months maybe longer. My eye feels very vulnerable now though, now that the bandage is gone. Just feels very open and its kind of scary! Oh! And I almost forgot, I put the eye drops in and if I thought they hurt before when I had the bandage on. O.M.G it is HORRIBLE now. They burn burn burn!!! But thats really the only pain I have now. Everything is soooo good in general and I couldn't be happier! Oh and it looks great too! There will be a new picture to come soon!