November 10th marked the first World Keratoconus (KC) Day and raising awareness is always something I have tried to do with this eye disease. I had published this on my old blog page but that was shut down a month ago, so to keep raising awareness for KC, I’ve reposted it for this blog.
Finding Out About KC
When I was 13 years old, I noticed that it was hard to see things like the blackboard at school, or reading a book, unless I had my head on a funny angle. I mentioned it to my parents who took me to the Optometrist to get it checked. I remember thinking “I better not have to get glasses!” I was 13, entering that peer pressure, teenage phase. Appearance was EVERYTHING!
After getting tested by different contraptions, I was told I had Keratoconus (KC).
….I had what?!
What Is Keratoconus?
The Optometrist tried to explain to me that the front surface of my eye, the cornea, was thinning and was distorted in shape. The best way I can describe the distortion, is by using the words he said to me.
“Everyone’s eyes are round like a soccer ball, yours are like the end of a football.”
I was told that 1 in 2000 people are affected and in approximately 15% of cases, the keratoconus progresses to the stage where corneal transplantation is required.
The best option at the time was to try the rigid contact lenses and see if that would help control the changing cornea. I remember them being the most uncomfortable things, ever! They weren’t too suitable as my cornea had already become too distorted to wear the lenses correctly and resulted in a couple of them breaking whilst they were still in. I think we went through a 1ltr bottle of Saline trying to flush one out. Maybe if it was detected earlier, the rigid lenses may have helped although I don’t recall having too many issues with my vision before 1988 .
How Did I Get KC?
The Optometrist had told me that it was a genetic disorder and asked if there was a history of it within the family. Due to being adopted at birth, there was no medical history given to my new family, and that question couldn’t be answered. After seeing a specialist in Sydney, I was placed on the waiting list for a Corneal graft in November 1988. The beginning of the waiting game.
Over time I had several hospital visits to have ulcers removed from the cornea, I spent plenty of days having to sit in complete darkness due to the light feeling like it was burning my eyeball and countless trips to the optometrist to have lenses adjustments done to my glasses. I could not wait until I was told that a match had become available. By the year 2000, I had given up my Drivers Licence and mastered the act of “I can see that” I was stubborn and tried to hide the fact that I was struggling so much. Finally, in May 2004, I received that call I had been waiting for. I had 24hrs to get to Sydney Eye hospital and be admitted.
My specialist went through the usual admittance procedure, even with the warnings they must give “1 in 15,000 reject the graft, but you’ll be fine..” The transplant went ahead the following morning and I was feeling great. Even the second morning, I felt great! That afternoon my specialist was doing his routine check and after looking at my eye, he was on the phone to his boss saying something about “cheese wiring” I found out that’s a term used when the graft is rejecting. He asked when my last meal was etc. and told me I would be in back in surgery in the next hour or so.
Oh…I’m that “1”.
Off we went again, 1st day great, 2nd day better. 3rd, 4th, 5th, it kept improving and stayed put. Relieved didn’t even begin to explain how I felt. 13 days after first entering the hospital, I was allowed to go home, loaded with drops and on the proviso that I returned each day to get a checkup done and sutures removed.
One thing I realised over the years, was that the majority of people had little knowledge about KC. I found myself having to explain, numerous times, exactly what it was. So I have included a link to Keratoconus Australia where there is a range of information, great resources and an online forum, giving other KC patients the opportunity to be in touch. They also provide an excellent booklet, regarding corneal transplants, from the Us Keratoconus Foundation which they can send to patients free of charge.
It’s nearly 13 years since I had the double transplant and I couldn’t be happier. I got my unrestricted Drivers Licence back in 2008, taken back up my passion for writing, published 3 eBooks and just recently became a Brand Partner for Nerium Australia. (Keep watch for future post) My biggest gain is being able to see my children’s faces clearly.
I have had several threatened rejections over the years, but I’m very stubborn and I’m not prepared to let it go just yet. I had never thought about what it would be like if I didn’t see a sunrise again, a colourful flower or the smiles on the faces of the ones I loved the most. I never realised how much I took my sight for granted…until I just about lost it. That’s something I know I won’t do again.
I strongly suggest that if you feel your vision isn’t as good as it should be, then make an appointment at your local Optometrist. You’ll either get the peace of mind that your vision is spot on or the opportunity to rectify it before it gets too late.
Til next time,
Stay safe, stay smiling 🙂