Hello to all

[denner]

Hi My Name is Graham I had a transplant in July and have found it tough since,The worst thing for me has been how lonely I have felt since it all happened with no one I know having gone though anything like this.No one understanding how bad my vison has become Im 34 and three years ago I didnt even wear glasses, I really hope this site will put me in contact with people who have been through this.The eye hospital rush me through appointments as im sure you know. Really hope some of you get back to me,Hope this site can help me.

[brigid downing]

Hi Graham

I am sorry to hear that you have been having a difficult time and know that there will be people who will know exactly how you feel. I cannot really claim that I do, but I sympathise.

I have been lucky enough not to need a graft so far, but I understand how difficult it is to explain to people what is happening. I have told most, though not all, of my friends and colleagues and the response has generally very sympathetic. But the then as, a few days or weeks later, they ask if my eyes are "sorted now", it is hard to know what to say sometimes. Especially as I am not always consistant - somedays bad/somedays not so bad. They say things like "your eyes look better" and I know they mean to help - but what my eyes look like to them is not really the point.

it's hard because I don't want to bore them or get a reputation of only talking about my eyes, but they are a huge factor in my life right now, and for the last few years. It is terrifying to think that as recently as 1998 I didn't even wear glasses - and now I am running out of options with contact lenses!

So, as I say, welcome to the forum and, though I don't know what you are going through I do understand what it means to need to talk about it.

Brigid

[Gareth2]

Hi Graham. welcome to the forum, you are amongst friends here. I had my graft back in feb and know exactly where you are coming from. you do feel isolated in the modern world but friends if they are good ones will be there for you just have to keep telling them how you are felling or give them a copy of the fact sheets from this site. so they can atleast see where you are coming from. it is a sharp learning curve but it is possible. just hang in there and just keep us updated and post how you are feeling. I also have now been registered parctialy sighted and have a local rehabilitation officer for people with low vision and that has been a great help. speak to loacal services see if you have one near you.
all best for now and future,

[John Smith]

Hi Graham,

I know it's a fair way for you to travel, but there is a group meeting in London (see the events page) on Saturday.

You or anyone else are very welcome to come along, if only for a chat with other people who live with KC!

And we'll even throw in some free sandwiches!

[Matthew_]

Welcome. I hope this site will be of use to you. We're a friendly bunch if apt to go off on strange tangents.

[brigid downing]

Strange tangents Matthew!
What can you mean?

Do you mean strange like the England football teams approach to playing big matches, or strange like how now that there are more TV channels than ever before there seems to be less and less programmes worth watching on any of them?

Brigid

[GarethB]

Hi Graham,

What you describe is similar to what I went through at 17, within 18 months of diagnoses I had my first graft with the second a year later.

We are the extreme cases, but now you have this site, you know you are not alone.

[Anne Klepacz]

Hello Graham and welcome!
Lots of the people who post on this site have had grafts (mine were 20yrs ago and still going strong) - which means we're not really typical of the KC population, because, naturally enough, the people with mild KC tend not to post here much. But it does mean you'll find lots of understanding!
And just a reminder that we're not only a website. We also have a postal mailing list of around 1100 people who receive our newsletters, our basic booklet about KC and write ups of the conferences we hold. A DVD of our 2005 conference will be going our with our next newsletter to all mailing list members in November. So do contact me if you'd like to receive these. Have you already found the Keratoconus at Work leaflet, which you can download from the main site?
Getting good vision after a graft can take a while (sometimes a year or more) but it's worth it in the end. So hang on in there - you're not alone!
Anne

[denner]

Thanks for all the replies everyone.I discovered this site yesterday and had this strange feeling in my stomach as I read posts about eye contact and contact lens pain,Getting down feeling low and it sounds weird to say but I felt so much better.I showed my wife some of the posts saying things I seem to say everyday,but could never seem to put into words she would understand.I too find myself unknowingly talking about my eves all the time,Only because at the moment its affecting my life in such a massive way.My right eye i also getting bad and can only take a lens a couple of hours a day so I know its only time until im thinking of a graft in that eye too.I was always such an active outgoing person I feel imprisoned now, confined to my house day after day,The biggest lift I have received in what I can only discribe as a near suicidal last few weeks is this site to know people are going and have been through what I am. and have come through it ok,Thanks again for your replies my fellow rubbish cornea`ed friends.

[GarethB]

Graham,

You will find that there are quite a few of us that have had counceling to deal with the depression that KC can lead to. It really helped me deal with the condition.

After the councelling I had the cinfidence to redevelop my communication and time management skills and work and as a result my carrer has gone from strength to strength in the past two years. With the help of others I have managed to my life around and at the moment i am beeting KC.

Had one hick up with lens tolerance, but after reducing my salt intake, increasing the amount of dairy products and drinking more water instead of Caffeine, fruit drinks (have whole fruit now) my lens tolerance increased. I increased the lens tolerance further after asking my optom about the quality of my tear production. We tried several eye drops and now I have increased lens wear from 2 hours per day to an average of 12 hours per day and I can do this non stop for a month. Where possible I do try and have one day off of lenses just to help maintaing my eyes in good health.

Hope this helps too.