Dealing with reduced sight without lenses

[Louise Pembroke]

That's interesting Per because here I was always told never to expect normal vision, that lenses or glasses would always be needed after grafting.

[Paul Osborne]

No problem Louise..

Actually what is irritating for us optoms is "ordinary" patients who can see if they wear glasses but choose not to. I actually end up arguing with them when they say "But I can see perfectly well " when they can't even get the top line!!!

Thats my dad! He won't wear glasses and is now suffering from long sightedness.

Silly sod really has absolutely no idea.

Which makes it a real pain for me as he has no concept of the whole KC issue when I try to explain it to him.

Paul

[John Smith]

Paul,

That was my Dad too. Before he recently passed away he maintained that his vision was perfect; and even better when wearing my late Grandfather's specs!

I ended up bullying him to see my optician and got a report (from her ) on him... she was amazed, that at 75 years old, he'd never seen an optician since 1935, and yes... when wearing Grandad's glasses his vision was near enough 6/6 to make no odds.

Of course, he was insufferably smug after that.

[Nessa]

Hi, i have been reading this forum to my husband (Andy) who has KC and as we have been reading it, we have been sitting here saying yup, yup yup thats it, yup thats exactly it..........lol.
We have 3 children, a son 9 and two girls 11 and 16.
Andy has had KC since he was 15, he is now 37 and has had 4 corneal Graphts on his left eye, first 3 rejected. With drugs 4th one didn't reject, it just failed. He was wearing a small lenses at first in his right eye, but had a job catching them as they very frequently pinged out. (me and the kids got very expert at contact lens finding..lol). So they gave him a scleral lens, which he was wearing for about 6 years. About 5 weeks before Christmas his right cornea totally buckled, so now all he see's is light and dark.
He is currently waiting for his 5th Grapht on his left eye, they reckon about a 30% chance of success, but if you dont try, you never know do you. And now we hope they will offer him a Grapht for his right eye.
Andy has his bad days and good days, he finds it very hard coming down the stairs, and lots of other situations as have been mentioned by other people on here. Also he suffers with severe Psoriosis and has to soak in the bath every day and shower after. What with the oils that have to go in the bath and the cremes that have to be put on daily, usually more than once, this he is finding much harder also. I do my best to support and help him (any tips from other husbands, wives, partners, family ect, would be helpful).
He is having cane training from a sensory social worker.
Anyway just thought you would like to hear our story, i wish you all a Happy New Year, look forward to hearing any comments and i am sure we will be writing some more in the future. (excuse any spelling mistakes).

[John Smith]

Hello Nessa, and welcome to the forum.

I'm very sorry to read about your husband, particularly as I'm going through a graft failure myself.

I know it always helps to know that you're not alone, and I'm glad that your husband has the support he needs at home.

You may like to contact Anne as there's lots of information she can send you if you don't have it already.

Please keep us informed of your husband's progress.

All the best,

[Nessa]

Thanks John,
Blimey we thought we were the only mad people who stay up this late........lol.......going to bed now though.

[Louise Pembroke]

Hi Nessa, I'm really sorry Andy has had such a gruelling time with his eyes and psoriasis. 4 grafts, that's heavy, sincerely hope the 5th works out. Tell Andy to feel free to have moan here when he's having a bad day, that's what we are here for. It does help to talk about our fears and know we are not alone. I've found this forum really helpful myself, members have good ideas about getting round problems, and I'm encouraged by others resiliance and determination.
Know what you mean about stairs, without my lens in I hate going down stairs especially if they're steep. What I do is feel the edge of the step with the heel of my foot, so I 'feel' each step before placing my foot down, and I take a little longer to get down.

[Per]

Nessa.

Your husband´s story is very similar to mine. Except from all the rejection trouble and the skin disease. I really hope he will have success on the next graft and get better vision.

As for using lenses on a graft, I tried this several times and had no success. Ended up not dearing to try more. Instead I lived with reduced siht for more than five years before I had a lasik-correction. Those years there was nothing on the eye, and on the other eye, still with a serious KC-tip on it ,I used a Rose K lens. Functioned well until this summer. If I hadn´t had lasik on the old graft I could not have been able to work again before the new graft has healed. So I understand the situation for your husband very well. Very good he got you around, caring and supporting.

Good luck with the new graft!

[Nessa]

Thanks for that Per, sorry if i sound a bit dumb, but could you or someone possibly explain what a Lasik-correction is? we have never heard of it, also a Rose K lens? not sure about that one either.

[Per]

Lasik correction is probably not proper English, since I am not English speaking myself. I mean a laser operation caller lasik, changing the curve on the cornea so you will not have to depend on glasses or kontakt lenses.

Rose K is one of the best known suppliers of hard contact lenses.