Having had KC for nearly 20 years and wearing RGPs, I was very used to my bi-annual opticians check-up. I had noticed that over the last couple of years my vision just wasn’t as good as it had been, and my right eye in particular was really not great – about 6/18. I’d also started to have what my optician thought might be some kind of allergic reaction to my lenses and my eyes would often be “gungey” and gritty and my lenses would become cloudy and dirty which made them difficult to see with. I was taking them out up to 2 or 3 times a day to clean them and as the day went on, the time before they were dirty again would decrease.

I could tell from my optician’s manner that he was frustrated about not being able to give me better vision, though I was still a little surprised when he suggested a referral to the hospital to see if “they could suggest any improvement.”

I thought no more about it until my appointment turned up a couple of months later. After a full afternoon of various eye tests etc I finally saw the Consultant’s Houseman who was rather abrupt and very ‘business-like’. He started quizzing me about how I might manage to work if I couldn’t drive etc and asked if I had considered a graft. Now I had considered a graft, but only as a very last resort and certainly not at the moment! He seemed a little bemused at this point and suggested that maybe we were at this last resort point. He continued with his examination and then put some drops in eyes and asked me to wait back in the waiting room for a few minutes for the drops to take effect.

When I was called back to his room the consultant was also there. He was a far more upbeat chap (although that said, his Houseman was also now in better spirits as I suspect he felt he’d passed on his difficult case to his boss!). The consultant examined my eyes and then pronounced that he felt a graft was the way forward. His reasoning was that, although my left eye was just about legal for driving, how would I feel if this also dropped to the level of my right and then I would no longer able to work/drive etc??

 

I asked him if they were his eyes, would this be what he would do – he replied “yes, without a doubt”. He advised that I should go home and consider my position, and ask my optician to let him know if I wished to go on the waiting list. I must confess to seriously considering this to be the way forward, especially as I was pretty much relying on my left anyway – what did I have to lose?

The consultant had suggested that following the operation, I would need maybe a couple of weeks off work, particularly as I have an office based job. When reading various blogs/accounts/etc of various people who had graft op’s done, this seemed a little optimistic with some people not returning to work for six months or longer. This was a moot point to me as I am self-employed; two weeks would be do-able with some planning, but if I didn’t work for 3 months I would likely not have a business to return to!

I hit the internet and checked out variuous options including soft lenses for KC. I then saw my own optician a few days later to discuss the outcome of the hosptital appointment.  I discussed different lenses etc (including Kerasoft 3) and he said that he had tried soft KC lenses once before and he thought they were rubbish! He advised that Rose K’s were the market leaders and if they were no good then that was pretty much the end of the line! As that was what I wearing, I could see I wasn;t going to get anywhere.

After a very interesting email exchange where I learnt I had very good uncorrected vision (!), I made an appointment to see Lynn White and travelled down to London a few weeks later. Within a matter of seconds of Lynn looking at my eyes with my current lenses, she declared “I don’t like the look of that” and asked me to take them out. After a few more tests etc (including another topography scan) she fitted me with some trial KeraSoft IC lenses, Engrossed in the eye test Lynn suddenly shouted “wayhey!” and I realised I managed to see a letter on the 6/6 line!! The result of the test was a revelation, I had just about got 6/7.5 in both eyes and Lynn was adamant that I didn’t need a graft if I could see that well. She also advised that had KeraSoft IC not have been suitable then many other choices were still available including Soclears, SynergEyes, sclerals etc, not to mention looking at CXL or Intacs!

A few weeks later I returned to London to collect my new KIC lenses. My vision was dramatically improved, and although my left eye is still slightly better than my right, my right is now better than my previously better left was with RGP’s. In fact, I could now happily work with just my right KIC lens when this would have been impossible with my old right RGP only! Comfort is in another league and I no longer worry about “bad eye days ”touch wood!". Previously it was quite common to have watering eyes, and although I often passed this off to clients etc as hayfever, I don’t think anyone was fooled! In fact, I had a small rash on my face where my eyes had watered continually!

This simply does not happen anymore and I feel ……..almost normal!! I’m getting up to 18 hours a day good comfortable wear with good vision. Also the urge to rub when I take the lenses out has now all but gone!

3 months later I had another Topography scan done by Lynn and I was amazed. Not at how well my eyes look now, but at the damage the old RGP’s were causing. After all these years I can suddenly realise that it was the treatment of my condition causing most of my problems and not the condition itself! I am still a little photo-phobic, but nowhere near as bad as I was previously. In addition, my eyes look brighter and ‘more open’ – my friends are amazed at how much better my eyes look and most importantly, I am no longer doing any damage to my eyes on a daily basis.

It’s fantastic to finally have an optician who truly understands KC and how patients deal with it on a daily basis – you might even think Lynn had the condition herself from the insight she shows! Opticians have previously told me to “leave my lenses out for a couple of days” without really considering the implications of this when I can’t just use a pair of specs instead, as the majority of their patients could.

Furthermore, my confidence has grown hugely. I knew I wasn’t seeing that well previously and it’s amazing how you con yourself into thinking things are ok when they are clearly not. Your vision levels drop off very slowly and it’s amazing how you get used to this and consider it normal – the huge jump into good vision is amazing! And finally, this is the first summer I’ve been able to play on the beach with my young daughter without the fear of sand getting in my eyes and causing me the pain and soreness it would have done previously – priceless!