Dear All
Prompted by John I realised that I hadn’t posted for quite a while as well. Had my corneal graft op in early January and now 5 months in. No problems at all after the operation itself. However in April I had the stitches ‘adjusted’ to try to reduce the severe astigmatism. Went back at the end of May to find that, just like John, the Dexamethasone drops had caused some increase in eye pressure so I now have changed to Prednisolone steroid drops and Timolol to reduce the pressure. Consultant told me that the astigmatism is still pretty bad (but see below) and that they will probably take the stitches out at the end of a year. This seems to be something they do on an individual basis – some they do and some they don’t.
I have not had to stop wearing my glasses – in fact they have never been mentioned! Sight is not too bad – better than before the op but still rather blurred. However with my glasses – which correct for some short sightedness and some astigmatism – my sight is much better – I can read the screen that I am typing on now from over half a metre away! Considering that I wouldn’t have been able to read anything on the screen at any distance before the op, this seems like a great improvement. Am hoping that with new glasses that properly correct for the astigmatism sight will be pretty good.
Funnily enough in the last couple of weeks I have had some slight discomfort but nothing much.
Have not adjusted my life in any way and in fact drove over 2000 miles across Europe in early May without any problems. I am lucky though, in that my good eye is, at the moment, unaffected.
Very interested to see how many 'foreign' visitors we are getting. Is Britain so far ahead in this area? Good to see that we are getting to, and helping, so many people around the World.
Best wishes to all
Robert
Quicktopic posts: Jun 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Lori
I was diagnosed with KC in June of 01.. So far I haven't had much luck with wearing the contatct lenses like I am suppossed too.. I get discouraged, frustrated, and can bearly totlerate them when they are in.. So needless to say I don't wear them much..
I get so upset with myself I feel like giving up on it..
How do you all keep going and hanging in there??
Any and all input would be so very much appreciated..
I'm scared,confused and don't know quite how to handle all this.. Please respond.. Thanx..
Lori
I get so upset with myself I feel like giving up on it..
How do you all keep going and hanging in there??
Any and all input would be so very much appreciated..
I'm scared,confused and don't know quite how to handle all this.. Please respond.. Thanx..
Lori
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Sue Ingram
Dear Lori, Sorry to hear you are experiencing problems at present; we have all been through it and it can be sooooo frustrating at times. You say you are having trouble wearing contact lenses - I am assuming that these are rigid gas permeable lenses? Have you been offered any other type of lens at all? There are different options, one of these being scleral lenses which are much more comfortable than corneals (albeit they look a bit terrifying when you see them for the first time!). Whereabouts do you live? Do you attend a hospital or opticians? It might be possible that someone knows a good KC optometrist in your area.
KC appears to be extremely individual and everyone with KC has to find the best option for them; the one that they can manage on a daily basis, however, as you can imagine this can take some time and will often be a process of trial and error by trying different lenses etc, etc. What works for someone else might not be the solution for yourself. However, eventually, you will hit on the way forward for you. Try to peservere - it is worth it in the end. don't forget, everyone on the discussion page is here to support you and try and help with anything that we can. We all have good eye days and bad eye days - for no apparent reason - but you do learn to live with it and carry on with a totally normal life.
Please email me on sue.ingram@virgin.net if you wish to chat further or even talk on the telephone. Take care and keep smiling! SUE
KC appears to be extremely individual and everyone with KC has to find the best option for them; the one that they can manage on a daily basis, however, as you can imagine this can take some time and will often be a process of trial and error by trying different lenses etc, etc. What works for someone else might not be the solution for yourself. However, eventually, you will hit on the way forward for you. Try to peservere - it is worth it in the end. don't forget, everyone on the discussion page is here to support you and try and help with anything that we can. We all have good eye days and bad eye days - for no apparent reason - but you do learn to live with it and carry on with a totally normal life.
Please email me on sue.ingram@virgin.net if you wish to chat further or even talk on the telephone. Take care and keep smiling! SUE
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Janet Manning
Dear Lori,
I totally support everything Sue said. You may well have the wrong type of lens for you or ill-fitting lenses. That's the first thing to check.
When getting used to putting lenses in and tolerating them I have found it's best to choose a time of day when you are not under any time constraint. Take your time putting them in and don't try to wear them too long at first. An hour would be a good start. It took me 3 months to get to the point where putting soft perm lenses in and out was second nature. Sclerals were much much easier, but if I rush even now I get air bubbles underneath.
I always lubricate my eyes with saline before taking the lenses out, as this makes it much easier. I also try to take them out before my eyes are too tired and I'm too tired to deal with it.
Above all be kind to yourself. If you manage an hour a day it's better than nothing at all. Let us all know how you get on.
Best wishes, Janet
I totally support everything Sue said. You may well have the wrong type of lens for you or ill-fitting lenses. That's the first thing to check.
When getting used to putting lenses in and tolerating them I have found it's best to choose a time of day when you are not under any time constraint. Take your time putting them in and don't try to wear them too long at first. An hour would be a good start. It took me 3 months to get to the point where putting soft perm lenses in and out was second nature. Sclerals were much much easier, but if I rush even now I get air bubbles underneath.
I always lubricate my eyes with saline before taking the lenses out, as this makes it much easier. I also try to take them out before my eyes are too tired and I'm too tired to deal with it.
Above all be kind to yourself. If you manage an hour a day it's better than nothing at all. Let us all know how you get on.
Best wishes, Janet
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Neill
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Mark
Dear all
A quiet day messing on the Internet had me come across this page, had no idea anything like this existed. I had a wry smile as I read through some of the frustrations many of you have had. Believe me, I've been there!
I had a left eye graft in December 1990 (Alan Ridgeway at the BUPA Hospital, Whalley Range, Manchester) when I was 14. At the time it was anticipated my right eye would be grafted mid to late 1991.
However, my right eye stabilised and the graft became unnecessary - it has never been done. After several failed attempts to find lenses I could cope with, a new specialist (Sophie Harper, again BUPA, Whalley Range) sorted me out. I now have 3 lenses. 1 to wear in my right eye with glasses and a pair to wear without glasses which were fitted in September 1999. I sound like her agent but SH is excellent.
Have to say now I very rarely give KC a second thought. Lenses are great as long as I don't overwear which of course is often difficult as I am blind as a bat without them!! Still it gives me a great excuse for poor golf shots!!
To anyone having problems adapting to lenses try and stick with it. Eventually you will be able to throw the lenses in whilst riding a roller coaster and forget there are in! OK, a slight exaggeration but if you follow previous advice and really take some time and be patient with yourself you'll get there.
Soon enough you'll be too preoccupied moaning about keeping lenses clean you'll forget how difficult you found it at first.
Best wishes and stick with it.
A quiet day messing on the Internet had me come across this page, had no idea anything like this existed. I had a wry smile as I read through some of the frustrations many of you have had. Believe me, I've been there!
I had a left eye graft in December 1990 (Alan Ridgeway at the BUPA Hospital, Whalley Range, Manchester) when I was 14. At the time it was anticipated my right eye would be grafted mid to late 1991.
However, my right eye stabilised and the graft became unnecessary - it has never been done. After several failed attempts to find lenses I could cope with, a new specialist (Sophie Harper, again BUPA, Whalley Range) sorted me out. I now have 3 lenses. 1 to wear in my right eye with glasses and a pair to wear without glasses which were fitted in September 1999. I sound like her agent but SH is excellent.
Have to say now I very rarely give KC a second thought. Lenses are great as long as I don't overwear which of course is often difficult as I am blind as a bat without them!! Still it gives me a great excuse for poor golf shots!!
To anyone having problems adapting to lenses try and stick with it. Eventually you will be able to throw the lenses in whilst riding a roller coaster and forget there are in! OK, a slight exaggeration but if you follow previous advice and really take some time and be patient with yourself you'll get there.
Soon enough you'll be too preoccupied moaning about keeping lenses clean you'll forget how difficult you found it at first.
Best wishes and stick with it.
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Srikanth Reddi
Hi all,
Im using a lens for my right eye which is effected with KC. Will this increase and spread to my other eye also. WHat is the remedy for this.
Please tell me.
If i need a cornea replacement when should i go for it. And will there be any hope that my eyes will be normal after surgery. Can somebody clear my doubts.
Thanks in advance.
Srikanth
Im using a lens for my right eye which is effected with KC. Will this increase and spread to my other eye also. WHat is the remedy for this.
Please tell me.
If i need a cornea replacement when should i go for it. And will there be any hope that my eyes will be normal after surgery. Can somebody clear my doubts.
Thanks in advance.
Srikanth
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Mark
Srikanth
No idea what would dictate if your second eye will develop/has KC. My eyes were both identified with KC at the same time. Presumably there is a better than evens chance your second eye has/will have KC.
However, as there nothing you can do to stop it and with better lens knowhow you shouldn't have any undue concerns about it.
Easy answer to when you should have a cornea graft. When and only when a surgeon tells you it is necessary. Mine was nearly 12 years ago and whilst it wasn't too bad it was fully 9 years before I could wear a lens in that eye with the interim period being one of 'bottle-bottom' specs. This was a pain because I couldn't see well enough to do anything without specs meaning football, swimming etc were all a no-no. A new cornea is unlikely to provide perfect vision. The likelihood is that you will still require specs and/or lenses so only have the op if necessary. It is not a 'quick fix'.
Basically find a good lens specialist and the likelihood is that KC will not cause you any real issues.
No idea what would dictate if your second eye will develop/has KC. My eyes were both identified with KC at the same time. Presumably there is a better than evens chance your second eye has/will have KC.
However, as there nothing you can do to stop it and with better lens knowhow you shouldn't have any undue concerns about it.
Easy answer to when you should have a cornea graft. When and only when a surgeon tells you it is necessary. Mine was nearly 12 years ago and whilst it wasn't too bad it was fully 9 years before I could wear a lens in that eye with the interim period being one of 'bottle-bottom' specs. This was a pain because I couldn't see well enough to do anything without specs meaning football, swimming etc were all a no-no. A new cornea is unlikely to provide perfect vision. The likelihood is that you will still require specs and/or lenses so only have the op if necessary. It is not a 'quick fix'.
Basically find a good lens specialist and the likelihood is that KC will not cause you any real issues.
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Barney
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