Jana's Cornea Transplant

Please Read and Try To Help Spread The Word!

2011-02-08T12:59:00.000-08:00

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

2010-11-06T14:04:00.000-07:00

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!!!!!

2010-09-11T19:36:00.000-07:00

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

2010-09-02T15:30:00.000-07:00

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

2009-10-08T18:13:00.001-07:00

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....

2009-09-28T19:14:00.000-07:00

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

2009-09-19T12:03:00.000-07:00

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

2009-09-16T14:08:00.000-07:00

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!

1 Week Post Transplant!

2009-09-15T15:10:00.000-07:00

Well, it looks like I finally made it to a week! And I feel fantastic! The only part that still hurts is putting in the eye drops. My eye feels GREAT. Its not sore or anything! Tomorrow I go see Dr.A for my one week follow up so hopefully I will get some more details on how its healing then. Other then that not much to report!

6 Days After Transplant....

2009-09-14T19:12:00.000-07:00

Absolutely NOTHING new to report. My eye is doing sooooo incredibly good. I could definitely go back to work tomorrow for a few hours, but since I still can't drive (can't for 2 weeks! doctors orders) I will be stuck at my parents house relaxing and watching tv until...well...a while. My eye still hurts but it is feeling better also. The worst part of the day is putting in my eye drops. It still hurts BAD. But I didn't take any Tylenol 3's or anything today!! Woo! Anyways, thats it for today!

5 Days After Transplant....

2009-09-13T22:45:00.000-07:00

Nothing new to report. Eye still hurts a lot (really sore!). But other then that everything is good! Here is a picture of me with my eye shield on. I have to wear this plastic eye shield when I sleep for 2 weeks so I don't accidentally hit my eye in the middle of my sleep. Pretty attractive hey? lol. Thank goodness it is only for 1 week and 2 more days!

4 Days After Transplant....

2009-09-12T11:33:00.000-07:00

So not much new today. Except that I have a bit more nausea then the past couple days. I think its just because my eye hurts so bad and I haven't taken any Tylenol 3's today. I'm going to try not to though and see how it feels. So I thought that maybe I would tell you what kind of eye drops I'm using (mostly for people reading this who are going to be having a transplant and are curious what to expect). This week I have 4 different kinds of eye drops and i put them in 4 times a day. The first one is an eye drop for pressure (i think!). It wasn't on my original list of eye drops to use but Dr.A gave it to me after the surgery because I was complaining of pain and he thought I might have pressure building behind my eye.

So these eye drops are called Vigamox. I only need to take these for the first week. Thank goodness because they sort of burn a little bit. These are to reduce inflammation and redness in my eye.

These eye drops are called Ketorolac (Acular). These are the devil to me. They burn SOOO incredibly bad. I'm absolutely convinced that these are the reason my eye hurts so bad. Evil evil evil. And unfortunately, I have to take these eye drops for a while. They are also used to reduce inflammation and redness.

Last but not least, this is Prednisolone (Pred Forte). It is the anti-rejection eye drop. Me and prednisolone are going to become very good friends as I will be taking this one for at least a year. The good thing about these are that they don't burn! Yay!

3 Days after Transplant....

2009-09-11T09:30:00.001-07:00

So.....it seems that the more days go by the more sensitive to light my eye seems to get. So these are the wicked shades I get to wear. Pretty stylin hey? lol. I got them from the nurse after my surgery. They do really help though! I find that even just wearing them to watch tv makes it hurt so much less. Everything with my eye looks good though. Still no redness or gooey stuff! I am sooo lucky! I still don't really have much vision whatsoever though. Like none at all. I just checked. lol. But with time. I just have to be patient. Seriously though, these eye drops I have to put in are KILLING me. They are so painful! They just burn my eye so bad. My mom says that means they are working. But I think next week when I don't have to put them in 4 times a day (only 2 times) my eye will feel a lot better. I think they really dry my eye out bad. Anyways, all in all I can't complain too much. Things are pretty darn good with it. I am still taking one tylenol 3 twice a day though. I tried not to but I just can't quite do it yet. On a happier note, i'm having my first visitors over to see me today! I hope they are as surprised at how I look as I am!

2 Days After Transplant....

2009-09-10T10:12:00.000-07:00

So today is not as wonderful as yesterday. My eye still looks AWESOME. No complaints there at all. It is just really quite painful today. Ow Ow Ow! I tried to take no T3's today but that did not happen. I took one instead of two though. I'm thinking I might need that second one still though. I am really sensitive to the light today too. If I look at direct light (like this computer screen) I get this intense pain shoot from my eye right into the middle of my head. So this is going to be short and sweet! I think it might be an audiobook day today and just let my eye rest.

On a happier note, aren't these flowers Kevin sent me beautiful?! Gerbera Daisies! My favorite :) Thanks Kevin!! xoxo

1 Day After The Transplant....

2009-09-09T13:07:00.001-07:00

Ok folks, here it is! The new cornea! Pretty awesome hey? This is only 24 hours after the transplant. I cannot believe how amazing it looks. I was expecting it to be red and disgusting and gross but it is absolutely gorgeous! My iris isn't perfect but pretty darn close! I doubt it will be noticeable unless you are really looking . I can see a TINY bit better then before but as the days go by and it heals i'll be able to see more and more each day. I can't stop looking at it! It is just the most beautiful eye i've ever seen! I did get it from an angel so I wouldn't expect anything less <3

Transplant VERY Successful!

2009-09-09T09:04:00.000-07:00

So I thought I'd write a post in detail about my transplant yesterday as I'm sure people are curious and it's easier writing it here rather then telling the same story over and over. So my mom and dad drove me downtown to the Holy Cross Centre in Calgary. We got there at about 7:15am and there were already about 6 other patients and there loved ones there. I go up to the counter where they ask me my name and what I was having done. I said a cornea transplant in my left eye. Then the lady takes the cap off of a blue permanent marker and draws a big blue X on my forehead above my left eye. At this point I feel pretty ridiculous but when I go to sit down, I noticed everyone else had a big X on their foreheads too. I look around the room and notice that everyone else in the room is significantly older then myself except for one lady whose name was Charlene. Charlene was in her early to mid 30's (remember this name!). So we are sitting there in the waiting room when one of my desk ladies opens up 2 sets of eye drops and she literally goes around the waiting room putting eye drops in everyones eyes. I later realized that one set of eye drops were for people getting cataract surgery (majority of the people) and the other set were for people getting cornea transplants (me and Charlene). It was actually pretty funny as the desk lady had to walk around administering eye drops about every 20 minutes. lol. Starting at about 7:45am they took the first two people back to surgery. Of course, I wasn't one of those people. I wasn't in the second round of people either. But at around 10:30am they finally called my name.

I couldn't get back there fast enough! I was taken into a big room with a bunch of patients that were divided my curtains. I was in a curtain room with an older lady who was having cataract surgery with Dr. Al-Ghoul (my doctor too). We were both sitting in dentist chairs. It was so cold back there! Between me being extremely nervous and being cold I started shaking uncontrollably. The anesthesiologist came over and explained he would be putting a needle into my eye and that it was going to be painful but it would freeze it afterwards. He obviously saw how scared I was about this and asked if I wanted a sedative before he did and I said I would definitely feel a lot better if I did. So he said he usually gives people adavan (a pill you swallow) to calm patients but he would give me an IV of something 10 times stronger. However he said I might not remember a few things and I said that would be fine. He came over and put in the IV and he said you should feel this fairly quickly. He was right. All of a sudden- BOOM. It hit me in the head like a ton of bricks. I remember saying to him "Oh yeah, I definitely feel it now". One of the nurses came and took the lady I was sitting beside back to see Dr. Al-Ghoul. Next thing I know, a nurse came to take me back to see Dr.Al-Ghoul. I thought to myself, Oh that was quick. I guess they must have got mixed up and took the other lady back by mistake. I later realized while lying on the operating table that I must have forgot everything from the past hour- including the needle in my eye! Perfect! However I do remember the entire surgery....

I got back to the O.R and they got me to lie on a very uncomfortable table. The room was again FREEZING. However they gave me a really nice warm blanket which helped warm me up right away. On top of the blanket they layed a big piece of plastic over top of me. Then they put oxygen tubes up my nose and then put a piece of plastic over my face (it felt like a garbage bag). Next I was laying there waiting for him to pull the plastic back over my left eye. Well that never happened. Sort of. It was the weirdest thing. I didn't even realize he was doing anything until he said "Ok, can you pass me the donor tissue please". Thats when I realized Oh my goodness! He already cut my cornea out! It honestly felt like both of my eyes were closed. It was the strangest feeling. After a while I could see his shadow when he leaned over me and a couple times I could see the scalpel or knife or whatever he was using going over my eye which was very uncomfortable. But it was virtually pain free! Next part though was not so pain free. When he was sewing the donor cornea onto my eye I could definitely feel it. It was VERY uncomfortable and it hurt. A couple times he would tug on the thread as well which HURT. Thankfully this part only lasted about 20 minutes. Dr. Al-Ghoul was really great though. He kept asking me if I was ok and he would say "only 20 minutes left, only 10 minutes left, 5 more minutes" which really helped. All together the whole surgery was about an hour and 15 minutes. Dr.Al-Ghoul also fixed my Iris (the coloured part of your eye) as the scaring went into my Iris as well. He said he fixed it as best as he could but it wouldn't be 100%. When he was all finished up he put a contact bandage over it which helps keep the stitches protected and also helps my eyelid not be so irritated which is AWESOME. He said the cornea transplant went great and it looked "perfect"! He put an ENORMOUS eye patch on my eye (I swear it was like 5cm thick). Next they took all the plastic off of me and a nurse helped me walk back to the waiting room to see my mom and dad. We were sitting there for probably 2 minutes when one of the desk ladies came over and gave me orange juice, cookies and 2 tylenol 3's. Then she gave me a prescription and told me Dr.Al-Ghoul would see me again later that afternoon. Then we were on our way (literally maybe 10 minutes after my surgery ended!). So we went to the pharmacy and got my prescription for 3 eye drops and went home.

When I got home I went straight to bed and I didn't wake up until it was time to go see Dr.Al-Ghoul again at his office. His office is in Chinook Centre Mall of all places in the professional building. Really first place I want to be with an enormous eye patch after I just had a transplant. So embarrassing. lol. Anyways, we get to his office and it is all the same people that were at the Holy Cross Centre earlier that morning! It was kind of funny because everyone had the same Big Sunglasses on. lol. I got called back and one of the nurses took my eye patch off and Oh-My-God did it ever hurt!!! I immediately put my big sunglasses on too and went back into the waiting room with the other patients. The office was so full that mom and dad had to wait in the hallway, only patients were allowed in the office. So all the patients were just chatting and one of them said Dr.Al-Ghoul had done 16 cataract surgeries and 2 Transplants that day! Crazy! There was also a guy who was probably in his 30's and he said he had just had a transplant 3 weeks prior and that he waited 7 years on the transplant list! Wow, did I ever feel lucky! And just a side note here....he looked AWESOME. You would never know he had had a transplant 3 weeks ago! So I ended up waiting in the waiting room for about an hour then I finally got to see Dr.A again. He looked at my eye and again he said it looked perfect and that he was really pleased with it. He also wrote me a prescription for Tylenol 3's (yay!) as I was in quite a bit of pain at that point. When I got home I took the T3's and after about an hour they finally kicked in. I also put in my 4 eyedrops (he gave me another eye drop for pain) and then put on my eye patch (i need to wear this hard cover eye patch at night for 2 weeks so I don't accidentally rub it or hit it while I sleep). Then I went to bed. I woke up a few times during the night because I have to sleep on my back and i usually sleep on my side which was kind of uncomfortable but i'm sure i'll get used to it. I just listened to my audiobooks on my ipod until I could fall back asleep again.

This morning I woke up fully expecting my eye to be crusted shut (as that is what i've read from other peoples experiences). I was VERY pleased when I took off my eye patch and I could open my eye just fine! No gooey stuff, No crusty stuff- Just Perfect! It doesn't even hurt that bad! Of course that could be because I took 2 Tylenol 3's again this morning but really it feels ok! A little uncomfortable, and when I put my eye drops in it feels like a chemical burn in my eyes but other then that its ok. The light isn't bothering me too bad either! Obviously, i've been typing this out! However my eyes are getting a bit tired now so I think i'll get some rest. I will try take a picture of my eye later for you all to see!

Just a side note......my mom and dad were talking to Charlene's husband and she said that she received her call on thursday (same day as I did) and we figured out that we probably had the same cornea donor which is pretty neat!

The Day Has Come!

2009-09-08T05:08:00.000-07:00

Well today is the big day. Only a few hours away from getting my transplant and I am so nervous that i'm physically shaking. I am so excited but at the same time I don't think I can quite comprehend whats going to be happening. I'll be able to see again out of my left eye, and I will no longer have people asking me "ew whats wrong with your eye?". I never thought this day would come! So wish me luck!! I'll try write something after the surgery but no promises! Here I go....

1 Day To Go....

2009-09-06T21:12:00.000-07:00

So, only 1 more day until my Cornea Transplant. I'm really starting to get nervous. I'm least looking forward to the painful recovery. I know in the long run it will be worth it though. I've been cleaning my house to make sure its nice and clean when i finally do come home since I will be at my parents house for most of my recovery. I won't be able to do any bending over so I have to do all my cleaning now. I also have almost everything packed in my suitcase. I'm not sure if i'll be gone 1 or 2 weeks so i'm just packing everything I have pretty much. I also finally bought a couple of audiobooks to put on my ipod to listen to since watching tv or looking at the computer will probably be excrutiatingly painful. Anyways, I should probably try and get some sleep tonight as tomorrow night i highly doubt I will be getting any sleep (i'll be way too nervous!!)

Thursday- September 3rd 2009- A Day I Won't Ever Forget.....

2009-09-03T21:13:00.000-07:00

I want to make sure I remember everything about this day forever. I woke up this morning and put my contact in and it felt so irritated and kind of burned so i decided maybe today I would wear my glasses for a change to give my eyes a break. So I put my glasses on and to work I went. At lunch time I had a couple of phone calls for people wanting massages so I called them back and then ate my lunch so I could get back to work. After I ate I noticed a Calgary number on my phone but I get so many phone calls I didn't think anything of it and thought if they didn't leave a message it must not be that important. I got back to work and was there for about a half an hour when I noticed my boss had left me a note on my desk that said "call dr.al-ghoul". I quickly grabbed the note and ran out the back door with my phone. I called and nobody answered. So I called again.....and again......and again.......and again. Then FINALLY somebody answered and said can i put you on hold. I was on hold for TEN minutes going back and forth in my head whether or not they were calling me for a transplant. I nearly got sick waiting on the phone. Then I finally got to talk to the nurse and she said "Jana, we have tissue for you. Do you want your transplant on tuesday?" all i said was "yes!!" then she started telling me the details and I couldn't even hear anything she was saying, I could not believe this was finally happening. She told me that she would see me Tuesday September 8th and I started bawling. I absolutely lost it. I'm still in shock just writing this, that this is actually going to happen. I've waited for so long and now the day is here. Its a full moon tonight, Thursdays are my lucky day according to my birthday calculator, and 8 is my favorite and lucky number. How ironic that I would get my transplant on the 8th, and only 11 days before my 24th birthday. Wow.......

Still Waiting....

2009-06-25T10:33:00.000-07:00

So it is now June 25th and I am still waiting for my transplant. I think that this lifetime I am supposed to be learning patience because this is ridiculous! My doctor said I would have my transplant by the end of June and so that means any day now I should be getting it. I hate this waiting and wondering. Especially when I can't plan anything ahead of time because I don't know when it's going to happen. Ugh...Back to waiting and wondering....

Wow

2009-05-21T09:03:00.000-07:00

So i've been searching the internet for other people with Acanthamoeba Keratitis- which is NOT an easy search- but after many hours I finally found about 5 other people who also were diagnosed with AK, and it was because of contaminated contact solution. I put a link up so you can read their stories if you want. It was so amazing reading their stories because I could have wrote them myself! I guess I've always kind of felt like I am the only person who has ever gone through this and felt that awful pain. I'm pretty sure I will never meet anyone else with AK, but at least I now know I'm not alone.

There was one girl in particular that i could really relate to. She is 23 years old, lives in Canada and she was diagnosed with AK only a few months after me! She also had to drop out of school, sit in dark rooms with the windows covered. No tv because the light from the tv is too bright. I could not believe it! That was me! She could even relate about the taking 6-7 different eye drops every hour for months. I wish i had known her 3 years ago! The only difference is that she already had her transplant- a year and a half ago!! How is that possible?! I had the infection before her and i'm still waiting. She lives in Ontario though, so i guess its different there. But a year and a half?! This sucks....

More Background.....

2009-05-20T16:44:00.000-07:00

So after reading my first post, I'm sure you are wondering how on earth I got this weird eye disease in the first place. Well, here is the explanation.....When I was first diagnosed with Acanthamoeba Keratitis Dr. Carlsson told me people get it from wearing their contacts in the swimming pool, hot tub, lake, ocean or shower. I never did understand that because i did not do any of those things! But what was done was done and I didn't really ask myself HOW this happened. Instead i was more focused on just getting rid of it! So after about 10 months of finding out I had this eye disease I was watching the local news and they had a warning about COMPLETE MOISTURE PLUS CONTACT SOLUTION. They said that some bottles had been contaminated with parasites and some people were reporting eye irritation, soreness and even blindness. Well I nearly fell out of my chair! It all finally made sense. That was the exact contact solution that I had been using. And I always knew it never made sense how I got it in the first place. Now it did! So it turned out me and 7 other people in Calgary had gotten this disease from the contact solution, although only me and one other person need Cornea Transplants. So, ANYBODY who uses Complete Contact Solution.... STOP!!! This company KNEW that some of the bottles were contaminated and they didn't do a recall until people started reporting blindness. There are a couple of lawsuits against them now which I am apart of so I hope that this company will pay for this (although how can you pay for making people lose their sight?).

The Beginning Of A Long Journey.....

2009-05-20T14:00:00.000-07:00

Hello Everyone! Welcome to my blog! My first post is going to be kind of a background as to how I ended up where I am today. This way you will understand why I need the cornea transplant.

So.... to the beginning of the journey! It was April 2006 and I was just finishing my 2nd year of university. I noticed that my left eye was starting to irritate me a little bit but did not really think much of it as it had happened in the past and it turned out to be nothing. The next few days it was still bothering me and it seemed to be getting worse - red, watery eye, sensitive to light etc. I went to my eye doctor and that is when i knew something was seriously wrong. He told me that he had never seen anything like this before and that he would have to refer me to somebody else because he would not be able to help me. I was absolutely shocked by this, as I had originally thought it was just a minor eye infection. Next, I went to an Opthalmologist who basically told me the same thing as my eye doctor had told me. Although this Opthalmologist said that he thought it could be the Herpes Simplex virus (same as a cold sore, but it travels into your eye!). So he gave me some eye drops to treat it and sent me on my way. If only it had been that easy. Over the next week my vision went from normal to completely blind. I was in such excruciating pain that I could barely even lift my head up. The Opthalmologist obviously took back his initial diagnosis and admitted that he did not know what was wrong either and that I would have to go to a corneal specialist in another city but I would not be able to get in until September! However, my Dad had a few unkind words for him and he ended up getting me an appointment a lot sooner- the following week! By this point I had to drop out of University and move back home with my parents (it had only been two weeks!), but this infection was BAD. The light was so unbelievably painful to deal with that I had to sit in the basement in the complete dark. Even the light from the TV was too much light for me to deal with.

Finally, the day when everything changes for the better......I met Dr. Carlsson. As soon as he looked at my eye he knew exactly what was wrong. He said I had a disease in my eye called "Acanthamoeba Keratitis". It basically is when a parasite sticks to your cornea and eats it. Yes, EATS it. It is VERY rare, but he said he had recently treated 7 other people in the city for it (which he thought was very strange too!). He told me the chances of somebody having Acanthamoeba Keratitis was 1 in 1,000,000! Lucky me! I soon found out that my eye had gotten so bad so fast because the eye drops the Opthalmologist gave me was actually feeding the parasite and making it grow faster. Dr. Carlsson immediately told me to stop taking those drops and gave me SIX new eye drops to take. I had to take the eye drops every hour, but space them 5-10 minutes apart which worked out to me putting eye drops in ALL day. This lasted for June, July and August of 2006. It was the most painful thing I have ever experienced in my life and I would never wish it upon anyone! A parasite eating my eye!! Not a pleasant experience.

By September, the infection had finally started to come under control (compared to what it was!), and I was able to go back to school. I had to wear an eye patch because the light was still very painful and the eye drops I was taking required me to keep my eye closed after I put them in. And just a side note here....I started at a new College that September and it is NOT very easy to make friends when you have an eye patch and glasses. Nobody wants to hang out with the eye patch girl, even in College. Anyways, it was a really tough start but it eventually worked out and by November I didn't need the eye patch anymore. However, something more noticeable developed. My left eye is scarred, and now all you can see is this white opaque colour covering my eye. My pupil and cornea are not visible. Because it is scarred, this means I cannot see because the scar is blocking my vision. This brings us to December of 2006- Dr.Carlsson first tells me I will need a Cornea Transplant. Of course, this is quite shocking for me to hear as I never even knew that was possible, let alone possible for me! However he tells me I will have to wait a full year before he even considered me a candidate for the transplant list because the Acanthamoeba Keratitis was such a bad infection to have because no matter how many eye drops you use to try kill it off, it can hide in a cyst form to protect itself and we would need to make sure it wasn't going to come back.

So I continue to see Dr. Carlsson about once a month for the next year, continuing to put eye drops in my eye only about 3 times a day. This brings us to October 2007. Dr.Carlsson tells me that the parasite looks like its gone and he thinks i'm finally ready to be put on the transplant list. I was soo thrilled! I could not believe the day had finally come. It had been such an awful year and I was so excited to finally be able to see again. I was thinking to myself "in the next few months i'm going to have the transplant!". Boy was I WRONG. Dr. Carlsson had told me the time frame of the waiting list for a cornea transplant was between tomorrow and 4 years from that day. Since I was only 22 years old though he told me that I would be at the top of the list (unless there is an emergency of course for somebody else). Well, it turns out that people do not like to donate their eyes. I continued to see Dr. Carlsson every 6 months and everytime he would tell me that they just had not been getting any tissue from donors. This was very discouraging news. I had finally lost hope and decided that I might as well just not have it done at all as I had gotten so used to not having vision in that eye anyways.

I continued with school and in April 2008 I graduated! This was a huge accomplishment considering everything I had gone through to get there. I went to Dr. Carlsson again in December 2008 and he once again told me that nobody had donated their eyes. This had become an expected occurance for me to hear. He then went on to tell me that he would refer me to his friend who is also a cornea specialist and that he might be able to put me on his transplant list too so that maybe I would have a better chance. In Canada each doctor gets a certain amount of tissue and this particular doctor (Dr. Algoul) received a lot of tissue (i'm not sure if it's because he has seniority over other doctors?).

January 2009 I meet Dr. Algoul. He checks out my eye and doesn't seem to be phased by it (i'm sure he has seen it before). He gives me two eye drops which surprises me since I have not needed eye drops for about a year. I then continue to see him for the next few months and finally in April 2009 he told me that I could go on the Cornea Transplant List. I asked him how long it would be and he said in the next TWO months!!! I was so excited as I never thought it would be that soon! I have waited so long for this and I was just overwhelmed with emotion by this news. I asked him 3-4 more times "Are you SURE its only 2 months?" and he said "Yes Yes Yes!".

So that brings us to today. May 20th 2009..... Just waiting for that phone call!