PLACED ON WAITING LIST FOR A GRAPH

[Libby]

Just got back from the hospital after being told that my daughters right eye is extremely thin at 257 and at risk of hydrops - a contact lens is only getting her seeing the top letter and therefore a graph is her only option.

I think we both already knew what today would bring - the waiting list is 6 - 12 months which gives us both time to get our heads around it. trying to keep positive and upbeat and thankful that at least there is something they can offer which hopefully will improve things

Hope you all have good Christmas's

Libby

[jay87]

Thanks for sharing Libby

It isn't always an easy decision to make whether or not to have a graft, but it seems like in this situation your mind has been made up by the situation, top letter is no good is it!

If we can be of any assistance here at KC Support association, or if you have any questions do fire away, and one of our many experts will be happy to help

All the best , have a lovely Christmas and I hope the graft goes well

Jake

[Libby]

Thanks for your response - tbh the fact that they say the eye is seriously at risk of hydrops has helped us to decide on a graph. Also the fear that it may come into the other eye. If we can get the chance to try to get some vision back into this eye if the worst happens and it developes in her left eye then hopefully we will have some vision in the right.

it is a scary thought and we are both very anxious but we are trying to keep positive.

Kind regards
Libby

[GrandPaClanger]

Hopefully you will both soon get your head round it. By the time I was told 2 1/2 years ago I already knew in my own mind the time was right. They operation it's self is straightforward enough with little pain afterwards more of a discomfort. Be prepared for lots of check ups for a couple of years. Also don't worry if the vision is rubbish it should improve. For a good year and half I wasn't getting the top line. After a few "adjustments" I am 4 lines down unaided, and one from the bottom with glasses or a contact lens (20/10). I hit a few bumps getting there with pressure problems and a cataract but nothing that wasn't sorted out easily enough.

All the best
Ian

[Libby]

Thanks guys for your responses - it really makes a difference being able to talk to people who have walked this path. I know we need to know about the problems that can happen but all to often it seems that's all wek hear. To hear some positive feedback is good and heartening to hear. I still feel very responsible for this as I have bilateral KC and know where my daughters KC has come from. I know that people will say its not my fault but it's heart when I know it's my genetic make up which has given it to her. I'm trying to stay calm and positive for her. Thanks again for listening

Kind regards Libby

[Anne Klepacz]

Hi Libby,
The majority of us (around 85%) don't have anyone else in the family with KC. And most people with KC don't have children with the condition. So whatever the genetics of the condition, they're certainly not straightforward and I'll be the first to say no, you're not 'responsible' for your daughter's KC. It seems KC can affect anyone and there's still a lot to discover about where it comes from. And you could turn it round the other way and say that your daughter has the benefit of a mum who understands exactly how it affects her, and can give her loads of support. All the very best to both of you.
Anne