During and After the "Keratoconus Blur"

I was first diagnosed with keratoconus at the age of 16. I spent the next 20 plus years trying a number of treatments because my first cornea specialist strongly discouraged the idea of having transplants at that time. I often wondered about that later because he also determined that my keratoconus would progress and my corneas would be very bad by the time I turned 40. So why not have the transplants back then?

The steepness of my corneas seemed to worsen every three to four years. In the beginning I wore Rigid Gas Permeable (RGP) lens which were almost as bad as the disease itself. Besides constantly losing or breaking them, they scratched my corneas which caused frequent irritation and sometimes eye infections. It was difficult to wear them for extended periods of time, which made most school and work days very miserable. Without lenses my vision was about 20/800 or worse. That made life as a student and educator very difficult to say the least.


Around the age of 36, the infections began to occur about every 60 to 90 days. By this time, I was wearing piggybacks (a hard lens over a soft lens) but the steepness made it hard to fit most lenses (soft or hard). So the lenses would pop out at any given time, especially during summer months.

In December 2007, while driving to work one morning, I got the worst stabbing pain I'd ever felt in my right eye. I thought it was just another irritation or infection that could be cured with a few eye drops and pain medicine. But it turned out that my cornea had detached itself from my eye. It was the scariest thing I'd ever seen. A few weeks later I had my first transplant.

Then in November 2008, the exact same thing happened to my left cornea which led to my second transplant. Things were great for a while. My grafts were healing well, my sight had improved greatly, and the lenses weren't so bad anymore.


But in April 2009, I awoke one morning to excruciating pain once more in my right eye. It was deep read, swollen, and my cornea had the cloudy look of a raw oyster...NASTY and FRIGHTENING! I immediately went to my doctor but he was unable to give a diagnosis. I went through weeks of testing and very expensive eye drops. Finally, I returned to my hometown were a cornea specialist there diagnosed my condition as a graft rejection. I had no idea what that was but after learning more, I was surprised that it happened almost two years post surgery. I've since learned of a graft patient who had a rejection 22 years post surgery. The length of the graph is irrelevant. This made me wonder how diet, lifestyle, etc plays a part in if or when one’s body rejects a graft. I’ve since started to conduct my own research and haven’t found any definite answers. But I have concluded, as with any other health issue, that making healthy food choices, staying hydrated, and being active always helps.

Since 2011 I've had two additional surgeries. In my left eye, I've had cataracts removed and a permanent lens implanted. I absolutely love it! I now have 20/30 vision which came almost immediately after surgery. I remember being so elated during the ride home because I was able to see clearly without the "KC blur" and read signs and billboards again. Something I hadn't been able to do for two years prior and not ever without the RGPs.


In June 2013 I received an artificial cornea in my right eye. My now cornea specialist strongly recommended it because of the rejection. It has been a somewhat pleasant experience. I hated the look of it at first. Before settling on its ocean blue hue, it changed colors weekly and (in my opinion) made me look like an alien.

Many people are fascinated by my new look. “Why do you have one brown eye and one blue?”, has become a great conversation starter, and I don’t mind at all. It also helped that I’ve learned I’m not a lone ranger when it comes to having two different eye colors. I have met a few people in my Facebook keratoconus groups who share my experience. I’ve even learned of a little girl who was actually born with one brown eye and one blue. She is quite adorable.

Stephanie's Artificial Cornea by Kirsten Beitler
Stephanie's Artificial Cornea by Kirsten Beitler
A very talented artist and fellow KC friend took the time to paint a portrait of me with my new signature look, “Stephanie’s Artificial Cornea.” I am truly delighted and very appreciative of her talent. Seeing the portrait has helped my self esteem tremendously.

In spite of a few post surgery challenges (high pressure and some nerve damage) I am extremely grateful that I no longer have to experience life through the “KC blur” and I don’t have to bother with putting lenses in my eyes. Be it soft or RGPs, it was not as pleasant and convenient for me as it maybe for others. Honestly, I would have rather worn glasses. But because of the level of steepness of my corneas, glasses did nothing to improve my vision.

Today I manage my keratoconus with daily drops that I'll probably use for the rest of my life as well as doctor visits every three to six months just to make sure all is well. I am so grateful for my two specialists as well as my last two procedures. They have allowed me to bounce back from my brief loss of independence.

I am also grateful for the many social media outlets that have allowed me to connect with others who are living with keratoconus. It’s a battle that only we can understand. For years I thought there weren't many of us but I now have friends who are not only living, but thriving, with keratoconus all around the world.

5 comments:

  1. Stephanie,

    Thank you so much for your story. Like yourself I am a long term veteran of keratoconus with my seventh transplant now in the process of rejecting. I am so upset about it.

    On the positive side I am now doing speaking engagements for the Lions Clubs who seem to know very little about our eye disease. At my next engagement, June 21, I am planning to tell them about you and your story.

    Thanks so much for writing.

    There are many stories about my experiences recovering from blindness from keratoconus which I lived through for eight very long years at this link. http://anastasiastoryteller.blogspot.com/search/label/Recovery%20From%20Blindness

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  2. Thanks for reading! I have received two grafts from the Lions Club of Georgia. I always thought they were more familiar with KC. I do know that some eye doctors don't now a lot about it. I am blessed to have a great cornea specialist who's very knowledgeable. Thank you for sharing me story, God bless

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  3. Your story is fascinating. God bless you! I cannot imagine going through all you have gone through. I am in my mid-50s and have only been diagnosed with KC within the past year. I have always had "lazy" eye with significant nearsightedness and have worn high-powered eyeglasses since I was 3 years old. I never really minded the glasses. In the past 9 months or so, I have been wearing scleral RGP lenses--2 different brands fitted by 2 different ophthalmologists. The improvement in vision is significant and I would love to be able to wear them all day without thinking about them. I can wear them for a few hours with good comfort but not anything long-term. I read all the stories about how comfortable people become with the scleral lenses. One of my doctor's has even suggested it might be a psychological issue. I considered that without offense, but I do not really think that is the case. My point here--yes, I have one!!--is that I appreciate hearing from someone with a lot of experience that has not been able to gain real comfort with the scleral lenses. Not that I wish the lack of comfort on anyone, of course, but just to know that it is likely not all in my head--other than the fact that my eyes are in my head! I wish the you best with you eyes in the future.

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  4. Thanks for reading and commenting. Sound like scleral lenses and RGPs are one in the same. I have only learned of the name "scleral" a few years ago after joining a few Facebook KC groups. My doctors have never mentioned that name to me that I can remember.
    I hope you are able to gain some comfort. Piggyback were the most comfort I had with hard lenses. Maybe you should ask your doctor if that's an option. Also ask about having a permanent lens implant. That has been the best thing for me so far. Aside from a little dryness, which would happen anyway, I can hardly tell the thing is in there. I've had it five years now with no problems at all.

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