UK Keratoconus Self-Help and Support Association

At what point did you decide to have a graft?

i currently wear an RGP on my better eye only and have vision to the second bottom line on the chart however the left cant torelate a lens and i can only finger count on the left

I wonder if a graft will be a massive improvement?

Hi Kieran,
I suspect all of us with grafts will have a different answer to your first question! Have you read Ken Pullum's excellent article on this, which goes through the various pros and cons.
https://www.keratoconus-group.org.uk/in ... ransplant/
I assume you've gone through the various contact lens options for the left eye - piggy backing and the various types of scleral lens?
For me, the decision to go for a graft over 30 years ago was an easy one. My KC was bad in both eyes, I was wearing lenses in both eyes but only managed to keep them in for the working day by gritting my teeth and trying to ignore how painful they were and how bad my vision in them was! They would come out once I got home and then I was finger counting in both eyes. So I was hugely relieved to be offered a graft and didn't have to think about it. Two years later, I had a graft in the second eye. My graft journey wasn't straightforward - I had various complications, including rejection episodes which were successfully reversed. And I still needed contact lenses for best vision after the grafts, but because I now had smooth, regular shaped corneas my lenses were much easier to fit and comfortable to wear. So I never regretted my decision - without the grafts, I would have had to give up work.
Have you been offered a graft? If so, would it be a full graft or a partial one? I'm assuming you normally manage pretty well with your good eye, though maybe your black dot has made a difference? How much does the poor vision in your left eye interfere in what you see and how much does it affect your day to day life?
I'm a bit like you at the moment - good vision in one eye, but finger counting in the other which has a very old graft, can't tolerate a lens any more and has a cataract. If it would help to talk things through, do ring the KC helpline number.

Thanks for the reply

I’ve managed well in the last 15 years since being diagnosed somehow wearing a hard lens in the better eye gives me really good vision - my brain ignores the left eye and gives me second bottom line on the chart vision

I use a piggyback method but most times wear the rgp lens on its own

Went to the eye hospital because of this annoying black spec in my vision which doesn’t impact vision just annoying

They said it was a clot in a vessel and probably won’t go back to normal but are doing more tests

They haven’t offered me a graft In the left but just asked whether I would be up for it - there’s nothing really to lose in the left as I can’t see anything

Kieran,

There is not a lot to add to Anne's comprehensive reply. Normally you would expect something better than next to the bottom line with the correct lens, which does suggest you are at the end of the road with that option. I can imagine you are struggling with daily living at the moment.

You said, "there’s nothing really to lose in the left". I was like that with mine and now 2 years after a graft I'm back driving again and don't need a lens or spectacles for that eye. The only additional question I think you need to clarify with your consultant/surgeon is that you haven't got other complications that might affect the outcome after a graft. I think it's fair to say that most surgeons will go for treating the worse eye first, if there is a reasonable chance of a good outcome.

Graham

When I say second bottom line I mean combined vision is fantastic and overall can see some of the very small letters with the lens

I think there’s nothing to lose on the left

at what point did I decide, after a couple of months of attempting lenses n tehm being no use to me, sinking within my eye, n getting stuckk n beign told my vision was rapidly vanishing n the only way to save it would be a graft, the graft failed, I have far less sight now than I did then, n deeply regret having the graft. I was rapidly booted up the waiting list due to how fast my KC progressed, I wish I had read more n not had it done, my other eye a few years later needed a graft due to all the complicaations from the other I refused. Yes living being legally blind ain't easy but I have grieved for the sight I had and have lost, n now I associate far more as someone who is living with sight loss that has left me blind than someone who has KC.

Sorry to hear that makes me feel silly for asking the question now - what made the Grafts fail ?