UK Keratoconus Self-Help and Support Association

Hi all. I was at the hospital today, and I had an appointment with a doctor I hadn't been with before. And what a brilliant doctor he was. He explained everything to do with how my KC is progressing very clearly. I also got a bit of surprising news. He told me that my KC is progressing quite fast and that my corneas are becoming quite 'hazed'. I was quite surprised when he told me that he doesnt think my corneas will last very long, and that I will inevitably need grafts, although it could be months or years before I need them. I wasn't expecting this- when was everyone here first introduced into the idea of getting grafts?

Also, I was advised not to drive at night if i can avoid it when I pass my test. Do many of you drive at night?

Amarpal

Its always good when you get to meet someone who cares and takes time in talking through it with you!

In terms of grafts...its really does depend....it can be mentioned when you are first diagnosed or it can be mentioned when someon isont having much luck in fitting your lens.....

With regards to driving; if you feel that you cant drive in teh dark then dont....you will know when you get to this stage....as you yourself will be struggling to fite the glare and focus on the road...

HTH

Jay

I was first introduced to the idea of grafts when I was 17, just three months after being diagnosed but that was because of the speed my KC was progressing. When I started having problems in 2004 post graft I contacted the original consultant and he said if we had the lenses we have now back in 1987 I would not have needed a graft quite so soon.

Some people as soon as they are diagnosed are told they need a graft, basically given worst case scenario straight away which scares the whatits out of you.

I drive at night OK, but only with corrected vision which gives me 6/6. My cars do have vareous fitments to reduce glare and my lenses are lightly tinted too to enable me to drive at night too.

If the doctor feels that you should think again about driving at night it may be worth taking that advice.

Rightly or wrongly we are expected to pass the driving visula standard regardless of time of day.

Armapal,
Without lenses I can just about get away with glasses in good weather but I never never drive at night. I tried about six months ago and swore never again because of the halo effects and glare, I just couldn't see well enough, it was dangerous. With lenses it is OK however. I still try to schedule my driving for good conditions (not easy on the west coast of Scotland). But basically everybody's KC is different. But don't drive at night if it is dangerous,its just not worth it!

I'm dangerous walking at night so if I did drive there's no way I could at night. I almost walked straight into someone's pond once as I thought it was just a block of different colour paving slabs in their patio.

Arampal

I was told that I'd need a graft on the day my KC was diagnosed. In fact I have posted elsewhere what I was told, "You will go blind and we will punch out your corneas and give you new ones from a dead person."

However, it did not seem to me to be sensible to let surgeons dictate my treatment. I kept wearing lenses for as long as I possibly could. In fact I waited a bit too long; but if that was a mistake it was my mistake and not somebody else's.

I have found that ophthalmologists quite like their patients to take contol of the management of their condition.

Still, it must have felt like you had been hit in the face when you heard this new doctor giving you news that you had not expected to hear. Next time you see the optometrist at the contact lens clinic ask her whether she sees any sign that you may need a graft soon. The thing is that new ophthalmologists are not always au fait with the possibilities that the range of contact lens options hold out for the KC eye!

Yours aye

Andrew

Amarpal

I was told when diagnosed in 1964 I would need grafts in both eyes before long. I was told the same about one eye or the other in the mid 80s and twice in the 90s. I'm still waiting but accept I have been lucky.

Obviously there may come a time for any of us when a graft or other surgery is the right choice. I just think we have to have a major part in making that decision - consultants aren't looking at it from this side of the cornea or lens.

Amarpal,

I was diagnosed in 1981. About three years later when my local optician decided he could no longer fit me with lenses he sent me to a different branch in Bristol where they had more experience of KC. The optician there took one look at my eyes and told me I needed a graft straight away! When I saw the eye specialist at the hospital he said it was possible to continue with lenses and referred me to Professor Roger Buckley who I saw regularly until last year when I was passed on to Ken Pullum and progressed to sclerals. So that urgently needed graft is still on hold 25 years after it was first mentioned and I will stick with my lenses until it is absolutely necessary for me to have surgery because that will be the last resort.

I do drive but I don't know for how much longer which does depress me slightly as it means relying on others or public transport and I haven't driven at night for years because of the glare from lights. However with scleral lenses I am able to do things I couldn't do wearing corneal lenses because they kept falling out, I no longer worry about losing a lens if I'm gardening or just out walking for wxample.

I hope that you too will be able to avoid surgery for as long as possible and will find the lenses that are just right for you.

Good luck.

Lesley.

Thanks for all the replies. I knew from reading info on the forum about grafts, but never expected someone to tell me that I would need it so soon! I will ask for some more information at my next appointment in January.

As for the driving, I think I will wait till I gain more road experience after I pass my driving test before I decide whther or not I feel confident enough to drive in the night.