UK Keratoconus Self-Help and Support Association

Hello - I've been wearing lenses for maybe 25 years (I'm 51). KC has got progressively worse and worse, and my tolerance to lenses seems to have come to the end of the line.
I've tried (I believe) every lens design known to science.
RGPs, piggy backing, sclerals (lots of sizes / shapes / minis/ soft / skirted etc) - now on the "soft" KC lenses -all thanks to the patience & professionalism of Rory M at Southampton General.

And 2.5 years ago (just to pile on the fun) I got hydrops in one eye. All OK now (and I have "good" (indeed "excellent" short-sight ever since at about 2 inches distance). But it still aches horribly, especially in a cold wind. Football matches, winter sailing trips etc now all unmanageable. And also I've taken too much aspirin over the last couple of years.

So I seem to run out of alternative lens designs. Really struggling to wear them now. Sat at my desk at work wearing just 1 lens this afternoon, hoping no-one will notice I have 1 eye shut. I can hardly see the (now 800 x 600) computer screen any more (vision ok with both lenses though) and I have a 50 mile drive home later (If I can wear both lenses, vision OK to drive). But I have to save the "wear time" for the drive home.

And when I get home first thing is tear out the lenses and I can't do much else than sit on sofa and listen to football on the radio. Can't see the TV but I do have a tablet which I can use OK lens-less with a bit of a struggle. And of course all this is getting me "down".

I've always put off the graft option as something for the distant future. Last time I saw a surgeon, he told me " a graft is a big deal - avoid it if you possibly can".

So advice sought please - those of you who have gone for the graft option - at what point did you jump / get pushed off the fence and go for it?


Bob

Hi Bob,
At what sounds like a similar stage to yours - though I couldn't drive any more even with lenses in. And in my case, I was in my 30s when the decision point came. But that was at a time when lens options were very limited. All I ever had was rgps. Scleral lenses did exist then, but I didn't know about them and was never offered them. So for me, there was no decision to make - my quality of life had deteriorated to the point where I felt I had nothing to lose, and the lens prescription was changing every time I went to the clinic. That was back in the 80s, and both grafts are still going strong (although I still need contact lenses or very high prescription glasses to get decent vision). So I've never regretted the decision I made, though we're all different and the tipping point will come at varying stages for all of us.
Good luck, whatever you decide.
Anne

Bob

I know this is a toughie; I postponed my first graft until I had been registered blind. I have never regretted having my two corneas replaced and am always grateful to the donor families.

Every good wish for whatever decision you make.

Andrew.

Hi Bob,

Join the club - I'm a year older, was diagnosed with KC in my final year at University in 1984 and consented to a graft in my right eye at the end of May last year after it was recommended by a brilliant young Australian consultant, Brendan Cronin at Manchester Royal eye Hospital (sadly Brendan is returning or maybe now has returned home to Oz having completed his secondment at the hospital to practice there)

i believe the advice the surgeon gave you re

" a graft is a big deal - avoid it if you possibly can"

was spot on. When was this?

Judging from what teenager Saima says here you are in a good area for a transplant (maybe it would be beneficial to have a chat:-

http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=8177

Whatever you decide to do all the best.

BTW your welcome to pm me or have a chat with me if you wish.