Keratoconus & CXL my story by Odai, USA

Hi my name is Odai and I am sharing my story with everyone. At the time of writing, I am 21 years old and I will be 22 next month. I live in the state of Illinois in the United States of America.
I want to start off saying I never had contacts or glasses in my life. I personally hate anything related to the medical field (that’s why I majored into business instead). I hate the idea of sticking something in my eye or anything related to doing so. Let’s move forward now.
Vision issues
For a few years, I noticed the vision in my right eye starting to deteriorate. However I thought nothing of it. My body adjusted to it and no harm was done. It continuously became worse and still, my body adjusted to it and everything was fine. When I played video games, I saw a shift of the game and it was blurry, so it made playing video games a little harder, but still, I was able to deal with it without any hesitation. I was still able to drive perfectly fine. If I wanted to see something on my right hand side, I would just have to turn my head a little more. It wasn’t any issue at all. At this point, I still never told anyone about my eye since I thought it was whatever and my body just gotten used to it.
So then came my 21st birthday, on December 19, 2012. At this point I had told my mom that I had some vision issues and I was worried that I was going to fail my vision exam for my driver’s license, since in the USA, our license expires 3 months after our 21st birthday. I enjoyed my 21st birthday, but I was worried when I went to sleep.
I woke up at 8 A.M. worried. I normally sleep in, especially since it was winter break and I had no school. I took a shower and went to the Secretary of State, a place where we can renew our driver’s license in our local cities. I was hesitant and getting nervous. My name was called up and I was asked to take the vision exam. There were 3 parts from the vision screening exam. I was able to see the left side and the middle perfectly, but the ride side was literally nonexistent. I thought the machine may be messed up or something. The lady said, “No. It’s working perfectly fine. Relax and focus your eyes and try again”. So I did try and I barely saw the first letter on the right hand side. She asked me if I wear glasses or contacts. I said I do not. I go to school in the city of Chicago, which is about a 45 minute drive from my house. I drive there and back perfectly fine. I can drive at night and still no issues. She said she will renew my license, but to get my eyes checked out, just in case. I said I will and I appreciate it.
Fast forward to February of 2013. I received my FOID (Firearm Owner’s ID) from my state police. I was legally able to handle a firearm and can purchase one, if I wanted to do so. My friends took me to the shooting range for the first time. They brought rifles and carbines, no handguns. When I went to shoot the carbine, it was hard since I am a righty, but can’t see from my right eye. I couldn’t shoot lefty since the bullet casings would hit me in the face and it would burn. I managed to try and it worked a little. I went to shoot the rifle and it had a bipod and scope. I liked it much more since it was a bolt-action rifle, which means you have to manually pull the bolt back to eject the casing and to push a new round into the chamber. Therefore, I was able to shoot lefty and use my left eye. It was a success!
Getting checked out
After having a great day, I told my mom that I really wanted to get my eye checked out. I am really enthusiastic about guns and love the recreational usage from it. Since I knew I was going to handle firearms more often, I wanted to see what was wrong and I was willing to compromise on a contact lens, if necessary. My mom made me an appointment to a vision center. I went there and they went to check my eyes. They were able to get a reading from my left eye, but not my right eye. They said they had no idea of what was wrong with my right eye and that they have never seen it before. Now when I heard that they have never seen this issue before, my heart started pounding and I was getting very worried.
Do I have a rare condition that nobody ever has? What’s wrong with me? You begin to question yourself and stress yourself out. They referred me to a specialist.
We made an appointment with the specialist at 8 a.m. (very early and terrible timing!). The specialist asked me questions, such as if I am a diabetic, do I have high blood pressure, etc. Thank God, I do not have anything like that and I am healthy. He dilated my eyes and did some testing. He ended up telling me that I have ‘Keratoconus’. My response is ‘what is that’? I have never heard of it. He explained to my mom and I what it was and gave us more information. The specialist said there are a few things that can be done to help me out. He recommended collagen Cross-Linking (CXL), but said it is not FDA approved (Food and Drug Administration) in the USA at this time (it should be in 2014). However, it is used widely in Europe and there are plenty of success stories with it. Now, here is something my mom likes to do. She LOVES to ask more questions that are unnecessary and make me feel uncomfortable. She asked what the worst case scenario is and to explain what a corneal transplant is and how the process works. Did I mention I HATE the medical field with a burning passion? Well, I HATE doctors and anything related to the medical field, with a burning passion. I told my mom to stop, but my mom REALLY wanted to know. As the doctor was explaining it, I felt very uneasy and I was about to faint. It was too much to handle at 8 A.M. and I did not eat or drink anything, so no sugar in my body
to help with this overwhelming news. The specialist ended up getting me juice to help me out and to keep me from passing out. After we left, I told my mom to never do that again and I will not want her to be near the doctor with me. She knew how I disappointed I was when she continued to ask (even though it is important to be well informed when it comes to eye health, and I know she meant well for me)  Anyways, the specialist referred us to their other location that has more advanced equipment to do more in depth checking on my eyes.
So a new appointment was made with their other location. My specialist’s name is Dr. Nicole Albright of Midwest Eye Center. I am perfectly happy to have her as my doctor. Remember when I said I hate doctors? She is by far, my favorite. She connected with me and was very understanding and helpful. She recommended me to get collagen Cross Linking and there were only 2 doctors in the state that do this procedure. She said she would help fit me with an RGP contact (Rigid Gas Permeable/Hard contact). She said that out of all her patients that have Keratoconus, I was one of the two that had a severe case of KC. She gave us the numbers of the two doctors and we made an appointment with Dr. Randy Epstein of Chicago Cornea Consultants.
We came in to speak with Dr. Epstein and he checked my eyes. He was very glad I came in. He is also a great doctor and I am thankful to have him assist me. He said my right eye is terrible and my left eye has a small hint of KC and it is ready to begin degrading my vision soon. He recommended that we do CXL as soon as possible. We scheduled an appointment with him on June of 2013.
Having CXL
The day of the procedure arrives. Both my parents take me. I told them to stay in the waiting room since I get nervous when people watch me when it comes to things like this. Remember, I hate the medical field so it makes me feel uneasy when people stare at me as something is done to me.
For the actual procedure:
Dr. Epstein checked my eyes once more. He put special drop in my eyes to numb it and put more liquid in my eyes to help the process go smoother. The male nurse said he was going to do the procedure and that Dr. Epstein will continuously check up on me to make sure everything is going very smooth. The nurse told me to lay on the chair and to relax. He said he was 28 years old and said the whole procedure will take about an hour and a half. I asked if I can put some music from my phone to keep me calm and relaxed. He was more than happy to have me play music.
He gave me a pill to take that helps calm my body and lower anxiety. It took a few minutes to kick in, but it worked. He began to put Riboflavin drops in my eyes at 15 or 30 second intervals. I forgot since he and I were talking and basically were kind of like friends. It was a great conversation we had. After half an hour, Dr. Epstein checked in with the nurse and I made sure everything was going smooth. The nurse continued again for another half an hour of Riboflavin drops.
After the full hour of drops were completed, Dr. Epstein came in. He put metal clamps to keep my eyes open. My God, that was PAINFUL! Now, I have metal clamps holding my eyes open and the nurse put the special light in my eyes. I looked into the light and the light was blue with green surrounding it. It was pretty cool! Here is the not-so-cool part, the nurse had to put eye drops in my eyes so they don’t get dry. What’s your reaction when you get a few eye drops that go into your eye? You blink, right?
Well, try and blink with metal clamps holding your eyes open! It HURTS!! Luckily, the nurse had the same phone as me so I asked him to take some pictures so I can look at them for the future.
Here is the special light that is about to be readjusted.
Photo 2
Here is before the light resumed onto my eyes.
Photo 4
Here is the light resumed
Photo 3
Here is a side view of the metal clamps with the light in my eyes.
Photo 1

 

After the whole procedure was done, I was a little out of it. However, I was able to walk a little. I thanked the doctor and the nurse for everything and we had an appointment for next day checkup. I went and used the bathroom just fine. My dad went to bring the car to the front and my mom waited with me. I was also wearing sunglasses to help my eyes. I got into the car and a few minutes later, the worst part kicked in. At this point, the special light and the Riboflavin began to mix in my eyes and my eyes began to burn. I was in SUPER DEEP pain. We had to wait for half an hour for Walgreens to make my eye medicine and my mom put them in my eyes. My eyes burned so bad that I could not open them, AT ALL. My dad had to hold it open while my mom put the eye drops in. Still, we had a one hour drive to get home. My eyes were burning like crazy and I was squeezing the empty water bottle that I had to help relieve some of my pain. It didn’t work out too well. When we got home, my brothers helped me to get into my room and I still couldn’t open my eyes. I had my 2 of my brother’s restrain me down while my mom put the eye drops in. My other brother’s wife began crying from all this pain that she saw me in. I was crying the whole time as well! It was an horrific point in my life. After 5 hours from the procedure was finished, I finally fell asleep from having no energy due to crying so much as well as screaming in pain and agony!
Recovery
 
Let me tell you this, I had the best sleep in my life after this procedure for about 2 days. I fell asleep for a few hours. I woke up and my eyes were literally SEALED. I used my fingers to break the seal open of my right eye. A gush of liquid came out of my right side of my eye. Then I broke the seal from the middle and more liquid came out. I finally broke the seal of the left side of my right eye and more liquid came out. I grabbed a tissue and cleaned it up. I did the same with my left eye. A lot of liquid gushed out. I put my head up, looked around my room, put my head down and I INSTANTLY fell asleep for an hour. I kept doing that for about 4 more times. My brothers and my parents checked up on me. After I finally woke up, I went downstairs and everyone thought I was crazy, which I was! I laid down on the couch and instantly fell asleep again. I woke up and had no energy. My brother helped me up and took me to the bathroom. I used the bathroom and went back to sleep.
I woke up the next morning and my parents took me to my appointment. This time, Dr. Majmudar checked my eyes out. He put some special bandage contacts in my eye to help heal them faster. He said it was looking good so far. We made another appointment for the next day and everything was still good. My eyes were VERY sensitive to light. If I was in my room, my blinds had to be closed so block out all light.
If I was going to leave my room, I had to wear DARK sunglasses. After 2 weeks or so, my eyes felt better but I still wore the sunglasses to make sure everything is good. We had a check up with Dr. Epstein and he said things were looking good. We scheduled an appointment with Dr. Albright and I emailed her all the reports that Dr. Epstein’s office emailed me, so she knows what is going on and is informed on everything, every step of the way. She helped fit me in for an RGP contact. It took us about 4 tries until we got the right prescription for my eye.
As far as the time of this writing, November 23 of 2013, things are looking good, Thank God. 
 My current issues with my eyes:
Since I wear only ONE contact , I have this twitch in my eyes. The other issue is, sometimes I have a burning sensation in my eyes, mainly my left eye. It lasts from 10 – 20 seconds, and it may happen twice a month. Besides that, that is my story. If you have questions, feel free to tweet me on Twitter. I have also made 2 YouTube videos explaining the process, but this writing is MUCH more specific. You can see my eyes twitch in the videos, so you understand what I am talking about.
Thanks Odai
Get in touch:
YouTube Videos:
Further reading:
Dr. Randy Epstein’s webpage http://www.chicagocornea.com/about
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