The Trials and Tribulations of Keratoconus

Corneal transplant due to keratoconus

Hello, I'm Chris, a 32 year old from Birmingham, UK. I was diagnosed with Keratoconus when I was 18, although it probably started to develop around 16/17. I remember going to the opticians thinking that I needed glasses and the optician being surprised when noticing the shape of my corneas. However, my sight was still absolutely fine to function in life perfectly well and I actually forgot all about it. After acquiring a degree and doing a bit of travelling around eastern Asia and Australia, life was going fairly well, I had lots of ambition and began DJing at various nightclubs around Birmingham.

At the age of 23, I remember waking up one morning and my eyesight in my left eye has severely degraded, almost overnight, I lost a significant amount of vision, naturally terrified I went to the doctors, who then referred me to the eye hospital and I began to properly learn about the disease that I had. Things became a bit different ever since that day, I had pain around both eyes for months, my right had also got worse (but nowhere near to the extent of the left). I found reading and using computers to be really difficult and just the detail of the world around me became distorted and murky, everything looked dark and gloomy all the time and like anyone with a blindness disease will tell you, you feel incredibly lonely.

I had tried for years to find contact lenses that would suit me but each time I just couldn't get on with them. I think I knew deep down that I needed surgery on my left eye as it had advanced so far to the point where lenses were incredibly painful to wear and vision could barely be corrected. By this time though I had become pretty depressed by it all and luckily my DJing work had been going quite well so I'd always been able to just about scrape a living, doing something that I really enjoyed and didn't really need good sight to be able to do, so life just went by, I just got on with it.

Corneal transplant (day 4)

By 27/28 I had noticed another big push in the development of Keratoconus, I think my left eye had advanced to the point where it couldn't advance any further and my right eye began to get worse. Even though I could get fairly good vision out of my right eye with an RGP lens, I had opted not to wear them, I started to accept that my sight was what it was and learned to live with it but as I became more anxious and depressed about it I decided it was time to really step up and challenge the problem I had.

Chris, a Keratoconus Group member
I didn't feel like my life was really going anywhere and finally built up the courage for transplant surgery. I was always under the impression that surgery was extremely risky and chance of success wasn't particularly great, which is what scared me the most. I didn't have to wait too long for a donor, I think it was about 4 months and here I am now, about 12 days after surgery, my eye appears to be healing well, I'm already starting to feel like it was a great decision. The days surrounding the surgery had been pretty tough physically and mentally but even at this early stage, although blurry and misty I can see better than I could previously and gone are the halos and distortions.

I know there's still a long healing road ahead but I'm very much up for the challenge. I haven't noticed any progression at all for about 3/4 years now so I'm hoping that the development of the disease has stopped and I can really deal with this burden that's held me back for so many years.

The above story was shared by Chris, a member of our keratoconus community on Facebook.

11 comments:

  1. Thanks for sharing Chris, looks like i'll be needed a corneal transplant out here in Hong Kong and it's great to read others stories. All the best

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    1. Hi James, thanks for reading :) All the best on your transplant! It'll definitely be the right decision long term.

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  2. Thank you for sharing your story. I'm terrified of the future for my eyesight...

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  3. I too am a transplant recipient, and recovery took about a year.. But it was so very worth it!!

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  4. Good luck dear Chris. I hope things get better with you sooner. I'm 30 and have been coping with KC for around 17 years now. Not easy really I know. I have advanced keratokonus nad a macular scar on the retina in my right eye which means I have to solely depend on my left eye. All this at 18. I completed my studies and I'm a postgrad working in IT. life wasn't and is not normal like evryone but hey hope is all we have. Good luck and I hope you betterhealing soon.

    Love,
    L

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  5. Praying for success. My nephew has keratoconus too. He is 19 :( I pray that we don't the transplant because it is scary, but reading yous post gave me hope. I will pray for you.

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  6. Praying for success. My nephew has keratoconus too. He is 19 :( I pray that we don't the transplant because it is scary, but reading yous post gave me hope. I will pray for you.

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  7. great story thanks for sharing it with us , I hope my husband could heal his keratoconus too.

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  8. Thanks for sharing and best wishes for the future. I was diagnosed in my early 20's, in my right eye only, way back then (I'm 62 now) like you say transplants weren't a good option and as I had good vision in my left eye a transplant wasn't an option. Big draw back is depth perception and not watching 3D movies, but I've adapted to live with it, I still drive as my eyesight passes the existing sight test, don't think I could be an HGV driver or Airline Pilot though. My recent eye check showed minor signs of KC in my left eye.

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  9. I too am a transplant recipient recovery took about a year when i had stitches out 5 years on and it was the best thing I done but now me other eye is going the same way good luck with your recovery

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