Updates

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, contacts....you 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. Hahahahaha...here 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 :)

Please Read and Try To Help Spread The Word!

Canadian Blood Services works to improve organ and tissue donation and transplantation rates

Despite Canadians’ overwhelming support for organ donation, donor rates in this country are less than half that of the best performing countries and have remained relatively flat over the last decade.

With that in mind, in April 2008 Canadian Blood Services was mandated by the Federal, Provincial and Territorial governments to develop recommendations to improve the performance of organ and tissue donation and transplantation (OTDT) in Canada. The organization has gone about that work in close collaboration with the Canadian OTDT community.

Throughout the process, thousands of stakeholders, recipients, donors, medical experts and members of the public from across the country have been consulted on the contents of a new system.

Preliminary recommendations were presented to the Deputy Ministers in December 2010, with final recommendations expected to follow in the spring.

New kidney transplant registry

In addition to developing recommendations, Canadian Blood Services was asked to develop a registry that would help facilitate more kidney transplants. In January 2009, the Living Donor Paired Exchange (LDPE) Registry was launched and has since grown into the first truly Canada-wide organ donation registry.

The registry, which facilitates transplants between those with a willing but incompatible living donor and other pairs in the same situation, has contributed to 69 kidney transplants to date, effectively removing 69 people from dialysis treatment, giving them an improved quality of life while saving millions of health-care dollars annually.

Learn more, share your thoughts!

• Please visit www.blood.ca/speakup to share your story, read the nine public dialogue reports or download the kitchen table kit to convene your own discussion on OTDT in Canada.
• Or visit www.organsandtissues/english/ldpe to learn more about the Living Donor Paired Exchange registry.

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!