Postby Anne Klepacz » Mon 23 Jul 2007 4:52 pm
I too had various problems along the way with my grafts, so it was far from OK for a few years, but like Vic and others, I don't regret having them. I don't remember being told anything about risks at the time, but that might be because I chose not to 'hear' - I was so desparate for something to be done to give me back my life - or it might be that 20 yrs ago, when I had my grafts, doctors weren't so good at talking things through beforehand. I do remember having my first real conversation about what a graft involved when I was already on the ward waiting to go down to theatre! I think for most people now considering whether to have a graft, things are very different. Surgeons are much more willing to discuss the risks and benefits (we had an excellent talk by John Dart setting these out at our 2005 conference). And of course, graft techniques have come on a long way since then and continue to improve all the time. So I'm sure some of the things that happened to us 'oldies' are much less likely to happen now eg I had my first rejection episode in eye 1 shortly after I'd had eye 2 grafted. That is now acknowledged to be a risk and hospitals now will 'keep an eye' on the first graft when they do the second - but such risks are only recognised after they've happened to a few people! And despite all the improvements in recent years, no surgical procedure is ever risk free and a few people will unfortunately experience the downside. Would I have gone ahead with my grafts if I'd known all the possible risks? I was a wimp in those days, so maybe I would have chickened out. But if I had, there is no doubt I would have lost my job and probably spiralled even deeper into depression. So I'm glad I did make the decision I did - it did eventually give me good corrected vision in both eyes, I did keep my job, I did get my life back. In the years since the KC Group began, I've probably talked to several hundred people who've had grafts and know that for the majority it does all work out well, even if the wait for better vision is sometimes longer and more frustrating than we'd all like. And yes, there are a handful of people for whom a graft doesn't work out, or who continue to have problems. Which is why most of us would say that a graft should only be considered when all other options have been exhausted. But also why most of us would say that it is a sight saving option which needs to continue to be there. Perhaps with the new options for KC that are becoming available, grafts will one day become a thing of the past. But that won't happen tomorrow and in the meantime, for some a graft will be the right decision for them. I hope too, that we can continue to listen to one another and learn from one another, while recognising that what's right for one person isn't necessarily the solution for another. And that a forum like this one can also help the health professionals to recognise that KC isn't just about eyes. Coping with distorted or deteriorating vision can be scary and affect self-confidence and self-esteem, something the medics aren't always tuned in to. So I hope it's something we can help each other with (perhaps a topic for our next conference?) and also help the professionals to look out for.
Anne