Before I have my right eye transplant next week I thought I would cover one more area of my first Corneal Transplant and the experience I had so that it might help others about to go through a transplant. I think most people that have KC who are going through or going to have a transplant cant help but think how good the vision will be after. In my view this has to come down to being used to seeing with KC. For example in my teens when my KC started progressing, it wasn't until a good 3 years into it that I was fitted with hard lenses. Upon being fitted with them I could not stop staring at my hands. The lines and the colours looked like something I had never seen before, maybe I hadn't! Either way seeing like that was amazing, and if a corneal transplant could get even anywhere near that I would of been happy.
After having my transplant in 2005 the vision for the first 6 months or so was very variable and I kept telling myself not to think about it too much. Once it settled down I actually had good vision in my transplant eye and had good enough sight to drive unaided. The only thing I can remember that was a pain even though could see well was excessive glare from cars at night. But this could of been a mix with my KC in the other eye. So for a good 6 to 9 months the vision was very pleasing and then came the time to remove the stitches.
I had read that I should not be surprised if I am left with some level of astigmatism once the stitches are removed but I did not really think much more about that. I had the stitches removed and that was one of the most painful things I had ever had done. It wasn't the actual removal of the stitches but the burning pain afterwards and not being able to look into any kind of light. Luckily this began to ware off not long afterwards but it really does stick in my mind the pain and I am not looking forward to that again. Unfortunately I was left with quite a high level of astigmatism and this is where "No Man's Land" began.
I was sent to the department in the hospital I had the transplant done for contact lenses fitting to correct the astigmatism. The first mention of lenses and my heart sunk as I really had enough of them by the time of my graft. I guess I should not of been naive to think I would not have to wear them again but because I got used to seeing with contact lenses or glasses it really did hit me hard. I tried multiple lenses and each one I tried over a few weeks I still could not get any decent wear time out of it. My eye would feel tired and the lens made it constantly go red and blood shot which worried me as did not want to harm the transplant. I asked about glasses and was told the astigmatism is so high that I would not be able to cope with the strength of the glasses lens and the depth of seeing things would be too difficult.
No lenses, no glasses and a high level of astigmatism in my transplant eye left me with poor vision yet again. And no one at the hospital really had any answers, it seemed they were more concerned with how good the graft looked and not the fact I could not see very well at all, they left that to the contact lens department. So for nearly 2 years from 2006 to 2008 I struggled by wearing contact lenses for as little time as possible as I could not tolerate them. At this time I was still working for The Royal Mail so I managed as I had done before without the graft. Again hindsight is a wonderful thing as I should have kicked up a fuss at the hospital.
In 2008 through my own research I came across a specialist in KC called Lynn White who was working at an Opticians around an hour away from where I lived. So after a few exchanges of email I arranged an appointment. She was appalled I had been left to cope with poor vision after the transplant and set to work helping me get better vision. She said there was no reason why I shouldn't get good vision with glasses and after testing my eyes etc, hey presto! we had a new prescription It took a few weeks to get used to but ever since then have been fine. I have driving standard vision in the left, the lens in the glasses might be over a centre-meter thick at the side but the main thing is I can see!
I owe a huge amount of gratitude to Lynn White for spending time with me working on my vision and getting me to see again. It meant I could live my life far easier than before and I am sure there are many other Lynn Whites out there helping people with KC and Corneal Transplants. I don't have any anger against the NHS for pretty much abandoning my eye sight as they have done so much for me over the years. I feel it was more a failure of a poor contact lens/glasses department with every changing opthamologist's due to budget constraints.
Anyway second time round I know not to take no for an answer and that nothing is impossible! Twitter is getting crazy now with 20 followers hehe but if anyone else wants to follow my right eye transplant from the 16th feel free to
@cornealgraft
Thanks
Oli
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