My Story
Posted: Sat 03 Aug 2013 9:52 pm
Hello everyone I am a new member having only just discovered this site after meeting someone else with KC who told me about it. They thought it would be worthwhile sharing my story if anyone is interested. I was diagnosed with KC in my left eye probably in my late teens although that seems so long ago now that I forget what my exact age was. I inherited it from my Dad. At first my sight was improved with contact lenses until it reached the point where that was no longer a solution, and I was offered a cornea graft. I ended up having 3 attempts at this the first time I was given a general anesthetic and came round to be told the op had not gone ahead because the cornea was found to be in poor condition when it was received at the hospital. The second time I had the surgery, but the graft rejected. I was given steroids by tablets and injection in the eye, but was unable to see anything but light and dark from that eye which was worse than before the op. However there is a positive to my story. On the 3rd attempt my graft was a complete success and I had restored and good sight in that eye. Not only that but that all took place ten years or more ago now, and I still have very good vision in that eye, and only need glasses for long distance vision. I see well unaided closer up. I wish I had met someone else who had had a graft to reassure me before my op because I did not have access to a group like this and I would not have been so worried. I want to say to anyone else about to have a graft that at no point do I remember feeling any real pain as such just a bit of discomfort sometimes which was perfectly bearable, and I would love to have been told that beforehand. There is a further part to my story as well. 4and a half years ago my longterm boyfriend ended up on a life support machine with Pneumonia. When the doctors discussed withdrawl of care and I knew he was going to die aged just 39 I asked about werther he would be a suitable organ Donor. He had his name on the organ register probably because he had seen me go through a cornea graft and I always told him how I felt about organ donation,so I signed the paperwork to donate his organs one of the hardest things I have ever had to do, but so worthwhile because of the gift I knew it was giving . It turned out the only organs of his that were in a suitable state for donation were his corneas and I later received a thank you letter saying his corneas had gone to two young women in their 2Os which meant so much to me because I was in my twentys when I received my cornea graft and 3 people donated on my behalf so I will be eternally grateful and am glad We were able to give something back.