Quicktopic posts: Nov 2002

[Robert Smith]

Anne-Marie
I don't think there is any 'usual length ot time' between diagnosis and graft. I was diagnosed when I was 20 and did not have a graft till I was 48 and even then it was my choice. I am in the lucky position of having one unaffected and very good eye and one affected by KC. What seemed to happen to me was that my KC eye settled down for many years and was just bad but not awful. It wasn't till I was in my mid 40s that it started to get really bad and that was when I decided to have a graft. Of course as you will have noted from this site many people don't have grafts at all and rely on lenses - something I just could not do. Incidentally it is clear that some people have grafts quite quickly after diagnosis. I think it is important that you do not think of 'normal' times but get a specialist to advise and help you - everyone is different

John
Thanks for the advice - I was getting worried too and have decided - unilaterally - to reduce my drops to just 1 a day till I go back to the hospital in December.

[Caroline Dyer]

Rosemary

In answer to your message, yes it is still Prof. Bron and the eye department is still at the Infirmary in the prime North Oxford/ Jericho location!!. Although he is my consultant I am yet to meet him in person, but hope to do so soon!.
Caroline

[sarah marsh]

hi
to all that have had the corneal transplant,i was wondering if anyone has found a web site about post op care providing information and support! there is lots of infomation on pre op but havent been able to find infomation reguarding after care both physically and emotionally any ideas would be appreciated.
also can someone tell me how to get into the KC chat room ?
thanking u all
love sarah

[ali cooper]

Hi Laura,

Yes I had a similar problem. I got my appointment for the eye clinic okay but after waiting four months for my contact lens clinic appointment I gave them a ring to see how far down the list and they said they hadn't had a refferal for me yet! Anyway as luck would have it they had a cancellation that day and I got down to the clinic and seen within the hour and now I am to collect my lens on wednesday (a little nervous about that as I have never worn a lens before)

Hope you have better luck with getting seen Laura.

Ally.






>From: QT - Laura <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: Tue, 5 Nov 2002 14:54:37 -0600 (CST)
>


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< replied-to message removed by QT >

[Helen Scholar]

My 13 year old son has just (in last three weeks) got his first contact lenses - overall he's very happy as he can now see out of his right eye for the first time for a couple of years. We've had a couple of accidents - broke first the left then the right lens - which has meant stopping and starting in wearing them.
However at first he was not wanting to take them out and perhaps wore them for longer than he should, despite my protests. Last couple of days though he's said his eyes have been itchy, and today that his right (worse) eye was hurting so that he had to take them out. We're due back at hospital next week,but as I've never worn lenses I wonder if these sort of experiences are common while getting used to them?

[Jas Rihal]

Can anyone suggest any tips/hints to see that extra bit clearer? Or are there certain foods we should eat? I have been diagnosed with KC 6 months ago. I wear rigid lenses when I feel like it, however when I put my glasses back on after lenses the next morning my vision is blurred, that is one reason why I don't wear lenses often. Do others agree?

[Helen Newham]

Hello to all who are out there,
I am a worried sufferer,had a cornea graft 4 years ago and on 11/11/02 it started to reject out of the blue, sight was good before , pretty scary at the mo, I 'mon Maxidexhourly ,and ciloxan 2 hourly, + one drop to dilate the pupil, Was just hoping if anyone could offer some tips or support, to reassure me a bit or anything really.
Love Helen .

[Robert Smith]

Helen

Oh dear it sounds awful. I haven't any advice I am afraid. Someone else on the list had something similar some weeks ago and it all cleared up so I hope that yours will respond to treatment too.

I had a graft 10 months ago and haven't had any problems so far. No-one tells you about rejection that far down the line!

Robert

[Payne Family]

What type of lenses is your son using - my daughter is 11 and has had KC since she was 4. She has managed (just) with glasses until recently but can now only see half of the eye chart. She has had awful trouble with hard lenses - although she gets very good vision from them - she finds them much too uncomfortable!

My daughter sees her local optician (we have to pay) perhaps she would be better seeing someone from a hospital (free lenses).

I find it frustrating and so does my daughter asking for different lenses that may offer better comfort.

My daughter loves soft lenses as they don't hurt but she can't see anything.
Regards
< replied-to message removed by QT >

[Helen Scholar]

Dear Payne Family!
Joe is wearing hard lenses - I don't know any more detail about them than that, although I plan to ask next week when we go back to the hospital. He is doing really well at the moment - better than I'd hoped. He's worn them all day at school today, with just a bit of discomfort towards the end.
I'm very surprised to hear that your daughter hasn't been referred to an eye department at a hospital - our optician referred Joe as soon as he realised he had KC (aged 10 and a half)
It appears people's experience is very variable doesn't it? Where do you live? Do you think that has anything to do with it?