Quicktopic posts: Jan 2003

[John Smith]

Gabriella,

I'd strongly advise you not to rely on your good eye whilst ignoring the bad eye.

I did that, and didn't go for the graft that my bad eye needed. One day, I realised that my "good" eye wasn't good enough to drive with any more, and because I'd waited, I was effectively blind. Nature gave you two eyes for a good reason - you really need both of them!

Admittedly, my situation was worse than yours sounds right now, but KC can have its own "growth spurt", and you need to be prepared.

As for the incidence of the disease, I didn't know that the Germanic countries were more prevalent than the UK, but I think that the US is.
NHS GPs in my experience don't have too much knowledge of KC, and are generally all too keen to refer you away from themselves. Ask around in your local opticians - go for the smaller independants, as some of them are very good indeed with KC.

All the best,

John

----- Original Message -----
> Should I consider hard contact lenses or shall I leave it as
> long as my left eye does the job?

[Sue Ingram]

Firstly, Happy New Year to one and all - lets hope its a happy and peaceful one.

Hi Gabriella (1270), I think you should definitely get your GP to refer you to a hospital/specialist and get some contact lenses as soon as possible. You will be surprised how much your life will change once you can see again with both eyes! I agree with John Smith when he says not to rely on your good eye until that is not any good either; nobody knows how slowly or quickly the deterioration can be with KC so best to be prepared.

I have found the NHS to be excellent in treating my KC which was diagnosed 25 years' ago. However, it is definitely dependant on finding a practitioner/hospital with expertise in KC so that they understand that the fitting of contact lenses can be quite time consuming on a KC eye. Does anyone know the nearest hospital to Birmingham that has experience with KC? Alternatively, you could investigate and see if there is an optician near you who deals with KC, however, this will obviously cost more money (but will take less time).

Good luck and keep is posted as to how you get on if you decide to go for the lenses. SUE

[Sue Ingram]

Hi Dal (1265), If you are really struggling at the moment, I would agree with Dave; if you can find a local optician who can deal with KC and fit you with rgp corneal lenses for the here and now, then you can still go to the Western Eye Hospital when you get your appointment through. It sounds like you need something now so that you can carry on with your life - it cannot just stop.

However, the key thing is finding an optician who has the expertise, time and patience to fit rgp corneal lenses on a KC eye, so you might have to try all the ones locally or even go a little further afield in order to achieve this.

Good luck with whatever you decide to do, and keep us informed of you progress. Take care and keep smiling :-) SUE

[Gabriella Todaro]

Hello John and Sue and everybody

thank you very much for your advise. I have an appointment with my GP tomorrow and hope he will refer me to a specialist straight away. I have been to an optician about 2 months ago. I mentioned KC but wasn't so sure whether he knew what I was talking about. He did a regular eye test and reckoned that there is no need for glasses. He said as long as my left eye was fine..... he didn't even mention the possibility of lenses.
Thanks again and I'll keep you posted

Gabriella,

[Robert Smith]

Dear All

Happy New Year to everyone on the list.
It is exactly a year today (Thursday 9th) that I had my graft. It has been an interesting year - not only for the eye but also participating in the discussions. Pleased to report that I have, so far, had no problems whatsoever. Got my new glasses yesterday and except for a slight blurring at distance I now have as good eyesight as my good eye. Quite startled to find that the world is in 3D!
Robert

[Gabriella Todaro]

One more question. I read that the condition is progressive but tend to stop after about 10 to 20 years.
I have been diagnosed 23 years ago but have the feeling that my right eye got worse during the last few years. According to that theory the worst should be over for me by now(??? ) Please tell me a bit more about your experience. Although I knew that I have KC all these years I was never really concerned and didn't really know much about it. I am so happy to have found you.
Gabriella

[Sue Ingram]

Hi Robert, Congratulations! Glad that everything has gone so well for you with your graft and that your vision is so good now. Sounds like it was worth it. Take care. SUE

[Sue Ingram]

Hi Gabriella, They do say that KC can stabilise in your 30's and 40's and (fingers crossed), mine seems to have done that, however, as we know with KC be ready for surprises! Everybody seems to be completely different and there is no crystal ball to tell us what the future holds and what is going to happen with our eyesight. For some people the progression is extremely slow (sounds like you and me), but with others, KC sometimes does not seem to occur until later in life and again sometimes the progression can be alot quicker and more dramatic, thus affecting peoples lives alot more.

I suggest the best thing you can do is stay positive, get yourself sorted with lenses so that you can see properly and don't let KC stop you doing anything. Try not to worry too much about what might happen (we can't predict it and we can't stop it) and deal with it if and when the time comes (hopefully it won't!).

Take care. SUE

[harpomatrix@yahoo.co.uk]

Hi everyone

Just thought I'd post another update:

Its now been 6 weeks and 3 days since I got the "severe" hydrops in my right eye. I last saw the doc just before xmas and he said that there had been no improvement. It was stll bulging outwards a lot and looking blue.

My next appointment is on Thursday 16 Jan. I'm hoping theres some good news because I do need it right now. Felt like X Mas and New Years was ruined by the hydrops cause my mood was off.

In terms of the hydrops now it still looks blue and still bulges. However there may be some slight improvement in terms that some of the fog seems to have disappeared on the right hand side of my right cornea. Its only a small fraction but i can see how many fingers are on my hand if i put my hand as far right if i look straight ahead. But if i move my hand more central to the eye the hand disappears.

Probably should be happy but it still seems like a long way to go and the eye still seems swollen.

Feel a bit like Frankenstein at the moment!

[Paul Bines]

I was lucky in that I went to an Opticial who knew about KC and who therefore referred me straight away - this was at my local Dolland & Aicheson.
Don't put it off - go as soon as you can for a check - not quite the same, but I had a graft on my left eye about 8 or 9 years ago, and put off having a more up-to-date assessment of my right eye until 2001 - when I was put on the waiting list for a graft.
Between then and havign the operation, I managed to get Corneal ulcers in my grafted left eye, which have rendered the graft useless. Until the operation in October, I had substantially reduced vision - luckily I don't drive!
Things are better now that the right has been grafted, and that I'm on the list for a left eye regraft, but even so, I regret not getting my right checked out more often - so don't delay!
Au Res.,
Paul