UK Keratoconus Self-Help and Support Association

Hi,

I had a successful graft in my left eye under Mr Daya at East Grinstead. So good I have 20:20 vision. I had INTACS fitted in right eye and have been working as well as can me expected under the circumstances, but, after a visit yesterday to the hospital I was informed that I need a graft in the right eye, and that it has deteriorated badly.

Here in lies the issue, when I had the first graft I was pretty niave, I didn't ask any questions, didn't know the risks and quiet frankly was not that bothered.

Now being older, some may say wiser I am more worried about it than ever, I know the facts, I know I have been really lucky to have such a good graft, but this maybe a one off.

So I though I would share my anguish with some like minded people and understand others perspectives and experiences (good or bad)

Kind Regards
Leon

Hi Leon and welcome to the forum!
Well, you probably won't find too many posts here from people who got 20/20 vision after a graft. But that isn't because it doesn't happen, but because those people are probably so happy that they don't need a support group any more! Seriously, as you probably now know, most people do need some sort of correction after a graft whether that be contact lenses or glasses. And of course, you've got the benefit of your excellent grafted eye to see you through.
My grafts (both eyes) were over 20 yrs ago and like you I didn't know anything about risks or downsides at the time. Though I'm not sure it would have made any difference to my decision if I had, as my vision at that time was so bad I couldn't cope with things as they were. I suppose I might just have been more nervous before each op. I've ended up with nothing like 20/20 vision post graft and need to wear contact lenses or specs to get good vision. But for me it's still a huge improvement on what it was pre-graft. If you want to know more about the pros and cons, there's an excellent talk from one of the Moorfields consultants on the DVD of our 2005 conference which I can send you if you e-mail your postal address to
anne@keratoconus-group.org.uk
Of course, only you can decide whether to go ahead with the second graft, and only you know how much the deterioration in your second eye is affecting you and whether you can manage as things are. What's certainly true is that surgeons generally have a wider range of techniques for carrying out transplants with every year that passes, and get more expert at doing the procedure.
All the best whatever you decide.
Anne

There is a slightly higher risk of an episode of rejection with 2nd grafts. I can't offer a statistic on that but that's what my consultant told me. However, an episode of rejection can be controlled, it doesn't write off the graft, and the key factor here is to get to the hospital asap if you suspect that's happening [photosentivity, redness, blurred vision]

Hi Leon

I was like you and did not truly understand the ins and outs of having a graft when I had both of mine done. Years later when I found this place, and other information on-line, I was quite taken aback to find out all the things that could have gone wrong, and was initially a bit angry at myself for not educating myself more at the time.

I had amazing instantaneous results with the first and only picked up on how unexpectedly good it was from the surprised comments of my doctors. When I was approaching having my second I was warned not to expect such good results again, but guess what, I had another brilliant graft.

If I had known back then what I know now I might not have had either graft (I would have certainly more nervous going in for them) but they have turned out to be the best thing I could have done, and apart from being quite photo-phobic they have minimised the effect keratoconus has on my life.

With all the treatment options available now I don't envy people trying to decide which route to take.

Take care, Alison