When I was about 17 years old I noticed my eyesight started to fluctuate. I could see well one day and the next I couldn't. As I brought this to my mother’s attention she immediate took to an optometrist and I was told I had astigmatism. For years, this was the only prognosis but as I got older I became worried because I could not stand the sun light in my eyes, even when it was cloudy I was in pain. So I wore sun glasses when I was out all the time.
People might have thought I was conceited for always wearing sun glasses. At the time, even my husband thought I wanted sun glasses to follow a trend and probably did not believe me when I told him the sunlight hurt my eyes. So when I decided to change optometrist for a second opinion I took him with me because I was going to have my eyes dilated. You know dilation, right? Well, dilation is when the optometrist puts eye drops in your eyes to get a better understanding of your eyesight. This process causes your pupils to become larger and sensitive to light, that is why you get those annoying plastic glasses.
This is what dilation is. Thanks Google!
This new optometrist, Dr. Pham, at The Sharper Vision www.thesharpervision.net, told me I had something other than astigmatism. She explained my cornea was not normal, it was cone shaped, and I had and still have Keratoconus.
What is Keratoconus?
“What is this disease?” I asked. And she explained so the way I understand it is that it is an eye disease that affects the way the cornea is shaped, its structure. See, a normal and healthy cornea is round and it directs lights and imagery to the center of the eye. My cornea is still round but it becomes thin in certain area, this thinning causes it to bulge and forming a cone, sort of. This shape sends everything all over the place causing blurriness.
Also at night, the lamp posts, bulbs lights, Christmas lights, the moon, anything that gives out light in my eyes they are “angels” as I secretly call them because they all have halos.
|The difference between a normal eye and an eye with the disease.|
|The way I see. In the positive side, life is always shinning.|
Dr. Pham explained to me about the halos without me ever telling her anything and that is when I realized it was serious. I became worried, I was scared. My glasses were thicker and I did not qualify for contact lenses.
Moving on without hope
A couple of years later, when my husband was being tested to see if he was a candidate for Lasik, I did my test too. I was praying and hoping I was also a candidate. I was told I could possibly qualify but more tests needed to be done to see if it was anything other than Keratoconus. My husband had his surgery and everything went well with him.
Then we moved to North Texas (NTX from now on) and I had to do my annual eye exam so I had to choose a new optometrist and I went for one that had very good reputation because they are one of the leading eye care doctors in the area. On my first appointment, I decided not to mention anything of my disease since I wanted their opinion. Again, they confirmed I have the disease and my doctor recommended I use RGP lenses; these are Rigid Gas Permeable lenses, fitted to the cornea and are best known as hard contacts. The job of the RGP’s is to flatten the bulge in the cornea so to help it become semi normal and halt the progress.
These contacts are indeed hard and so damn uncomfortable, in my experience. I had never worn any type of contacts so this was the first time inserting something in my eyes. The vision was better but the sensation I could not take. I wore them for about 4 hours the first times then I had to remove them because my eyes got so red I probably looked high all the time. Or I looked as if I cried for hours. But my eyes began to accept them and I was able to leave them longer and I became a happy camper.
One day, I was taking them off after I got home and I was cleaning them, I pressed a bit too hard and broke one. Bummer! I had spent too much on the contacts so I was upset at myself. Good thing, a year had passed and I could go have another annual exam but I did not want to go to the same optometrist so I went to a different one.
This time I chose Ford Eye Center www.fordeyecenter.com, here my doctor us Dr. Baker and luckily for me, this is it. No more looking for the perfect eye care professional. He has been the most honest and helpful of them all in NTX. Dr. Baker took my cornea measurements and ordered my new contact lenses. When I had to pay for them I discovered the previous eye center had ripped me off!! They are expensive but not double or triple the amount, damn!
Speaking to Dr. Baker was easy and I trusted his advice (maybe because he also graduated from UH) so he told me that there was a group of doctors in NTX, Dallas to be exact, that were cornea professionals and were doing a treatment for Keratoconus. He said that when I was ready he would refer me to them, to Texas Cornea Associates www.corneatexas.com .
After that talk, I immediately began my research. What where the possibilities to cure or treat my disease? I learned that there was a study being done in the U.S. This study is called Crosslinking or CXL and this has been a treatment done for years in Europe but it is in its early years in the nation and so the FDA has not approved it yet; which means that the insurance companies do not cover it. Another hiccup.
My research brought so much hope to me that I spoke to my husband, enlightened him and took the first steps to making this happen. Research for doctors in NTX and in Houston, I checked their treatments and called at least 5 of them to get more information and better explanation. I checked the studies they belonged to and finally chose the Texas Cornea Associates.
My First visit
In April, we went to our first appointment. It was to see if I qualified for the surgery and I had extensive tests done. First, a regular eye exam, dilation and all; then I had my cornea measured with this soft ball instrument that touches the surface of my cornea momentarily. This gives the doctor the thickness of the cornea and of course which eye needs more treatment.
My physician here was Dr. McCall, he explained in detail the entire process and he never sugar coated anything about it. I truly appreciate his honesty as well. He has a passion for his profession and that is something I admire of a person.
What is CXL?
Dr. McCall explained how this procedure worked. He told me that it consisted in putting riboflavin (Vitamin B2) drops in the eye for about 1 hour and the sealing it with UV light for about 30 minutes. He said the entire process would be approximately 2 hours. The drops restore and strengthen the collagen fibers.
A normal cornea sort of looks like a brick wall and a cornea like mine looks like a brick wall with longer bricks. So the treatment help the cornea get a thicker in hopes of halting the progress. Exciting, I know.
Dr. McCall told me that my disease was moderate and that I should seriously consider getting this done more sooner than later. He said that if it progressed at a faster rate, my other option would be a cornea transplant which he wanted to avoid me. He explained everything in such a way that I began trusting him with my eyes. He told us the price per eye would be $2500 and that the study consisted of a year in which I had to attend visits every 3 months to see the progress. Also, he explained that this was not a cure but merely a prevention process. He asked if we wanted to set up the surgery date or if we needed time.
Of course, I needed time; I had just heard something I was terrified of. We left and went out to eat, there we discussed our budget and the what- ifs. And soon, I began doing more research, this time I wanted to know what future treatments there were but I could not find more.
Finally, I made the appointment. I was told I would only need 3 days to recover and that was it, so I asked for a Friday, I didn't want to miss any more days from work. I was given a pre-op appointment and was told to stop wearing contacts two weeks prior to the appointment. Since I hated the contacts, I stopped two weeks prior to my first appointment with them. And my pre-op was for July 29, surgery date August 1.
The week of the surgery I swore I was not nervous at all; however, I had such a bad pain on the side of my stomach throughout the week. I talked to my coworker about it and she told me “Wow, you are that stressed out about your surgery.” That is when it hit me, I was freaking out about it but I was acting strong in front of everyone. I was freaking out so much I became very sensible and almost wept for stupid things.
On August 1, the Friday, I had to be at the appointment at 1 PM. My husband and sisters went with me and thankfully they were in the room throughout. They kept me positive and I couldn't be more thankful.
|Getting ready for the surgery|
As soon as I get there, I am giving numbing eye drops constantly and another drop to lubricate the eyes and prepare them for the good stuff, the riboflavin. This went on for probably 30 minutes. Then the doctor opens my eyes with these instruments, and then I hear my husband say “I've never seen her more surprised to see me.” We all laughed, I think I laughed because I was nervous. Then the doctor checks my eyes and says we are ready and lays me flat. He explains the rest of the procedure: with the help of surgical sponges he will soak them with riboflavin and rub the cornea and leave it in place, constantly putting more vitamin and moving it so the cornea gets soaked.
As I am lying down, I notice a target on the ceiling and as I have the sponges on my eyes this target has many shapes. The wonderful technician eased my time there by making conversation with all of us in the room. And I tell her that my right eye is the sensitive one because I can feel the sponge in my eyeball. She tells me that that is common, we all have dominant body parts and eyes are no exception. She said “Your eyesight is better on your right eye and if you are feeling it is because it’s your dominant eye.” Great, but numbing it more could have dominated the pain afterwards, probably.
At the end of this session, the doctor come in and measured the thickness of my corneas. And yay! The procedure increased its thickness which so far means that it worked!!!!!!!!!!!!!!
And lastly, the treatment had to be sealed with UV light, the light that the dentists use to seal fillings but this one is especially calibrated for this CXL. This process would last 30 minutes with 15 second periods and then the light would go off for a brief moment, very brief. I saw a bright purple dot and surrounding it was a bright neon green light. I told this to the technician and she told me the neon light was a reflection of my eyes. She said that when the doctors check our eyes with the bright light the eye transparent and that color. Whoa, how awesome is that?!?
Then the doctor arrived and I sighed in relief. He checked my eyes again and said it sealed wonderfully. He told me to get ready for the fun part, he said that in 10 minutes the pain would kick in and gave me pain sedative in eye drop form. He warned me to use it every hour to calm the pain but not to abuse it because I would only prolong the pain. He told me to take the hydrocodone pills he has prescribed on the day of the pre-op and use the other drops accordingly.
Hell, he was not kidding when he said the pain would start soon. As soon as I stepped foot outside I began a day in hell. It was traffic time and the drive home could not have been worse. My left eye became the first to act up. Although, I had my eyes shut closed and was wearing sun glasses, the light was such a nightmare. I inclined the seat and begged my sister to put on an eye drop on my eye. To put the eye drop, I had to force my eye open. The pain disappeared for about 10 minutes or less and then the other eye begins.
I know my pain tolerance is like zero but who would really tolerate this pain? It’s a stinging pain that no hydrocodone or pain sedative could calm. As we get home, my husband helps me get off the car; he walks me inside and takes me to bed. At this moment, I released everything I was feeling before the surgery, I was afraid and nervous and now pain, so I cried because of all this. I continued to be afraid but this time because I wasn't sure if this pain was normal after the surgery or if it was because my eyes were not accepting what had just happened or where my eyes falling off?
The pain was so that I couldn't be in the bed, I fell on my knees and the stupid hydrocodone never kicked in. I lied on bed, got up, came out of the bedroom, roamed around the house with my eyes closed and my glasses. I was careful because I didn't want to fall and mess the result. Stupid, I know. It’s not like my eyes here just glued on. But at this moment, I was allowed to be a drama queen. I was allowed to whine. I was entitled to my suffering.
It had been a long day and I felt bad for my husband and sister, I felt I was keeping them from having a tranquil weekend. So when I decided to move into our closet, I wanted to be alone and I was for a bit and then both walked in and made me company. They were in a very dark room with a very whiny girl. They were awesome to me and that helped ease the pain and the process. For a few hours I stayed in the closet in pain with no way to think of anything else. Apparently, pain does not allow one to focus on anything else but the pain. Unless one gets used to pain, I guess.
At night, I moved back to the bedroom and lied in bed, the pain was still the same and I remembered that the technician told me it would feel like a sun burn but in the eyes. So she said to use ice bags over my eyes to calm the pain. Well my husband brought the ice but did not help, it bothered me more. So I told him to get me tea bags dipped in frozen water. That helped wonders and for a few minutes with the help of hydrocodone, I was able to sleep. Then I woke up and I told my husband the pain was gone. Yeah right! As I was falling back to sleep, I am interrupted by the stinging pain. My night was a rough one.
On Saturday morning, I get up, tired in pain and with my eyes closed. I take a shower with my eyes closed and carefully making sure water does not get into my eyes. When I dry my face, I gently tap it so I don’t hurt my eyes. And then off we go to the doctor for follow up. He tells me the procedure went great and that everything is great. We came back home and I spent the time lying around. The pain subsided and the pain killer finally kills what's left of it, so I can sleep. YAY!!
|Scooby taking care of me and my crusty eyes|
When I wake up around 4 pm, my husband is watching Tengo ganas de ti, a Spanish movie starring Mario Casas (a great actor). So, I wake up to see the face of Casas on the screen and I am in shock, I feel my vision has improved and I start crying. See before, without glasses I could see a blurry face on TV and this day I saw his face clear. I saw my husband’s face clearly. I am happy, I am stoked. I am grateful to our Father Lord and my husband and sister, Lana and , too.
Today, a week later, I am still improving, still putting drops to help the eyes heal. I am back to my normal routine.
Today, I know that no one yet knows what causes Keratoconus. It’s believed to be genetic and that it possibly skips a generation. I don’t know. It’s also believed that the rubbing of the eyes worsens the disease if you have it, not really causes it.
Today, all I want is to spread the awareness and hope surrounding this disease. I want you to be thankful for your healthy eyes or your faulty eyes, none the less, grateful. I want you to not judge anyone because you never know how heavy their cross is.
Today, I want to thank the amazing doctors and technicians who have helped me through this journey.