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....
Thursday, May 21, 2009
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.
Wednesday, May 20, 2009
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?).
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!