Sorry for the depressive post. I know my condition of it wont be as bad as others but I'm really looking for advice.
I have KC in my left eye and use a GP lens to correct it. My vision is much better when I first put it in but by about midday the vision is blurry and sometimes even feels like a white hue is put across the lens.
I feel my right eye is beginning to show signs of KC now too. I just don't know how this leaves me. I've been managing to cope with the condition based on my right eye being fine. Now this is starting to show early signs I'm getting stressed and worried about the future.
Im deeply worried as I'm just about buying a house with my wife. Im sure worry is normal but with my right eye becoming an issue I'm worried I'll have to stop driving to ensure I have the correct vision I require.
I also don't know how to cope if I lose a lens or get an eye infection. I'm basically useless to my job if I can't do the work so why would anyone employ someone with KC?
Sorry for the long post. I'm just feeling a bit down about everything and hoping that some of you might comfort me!
Feeling downbeat
Moderators: Anne Klepacz, John Smith, Sweet
- Anne Klepacz
- Committee
- Posts: 2294
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Feeling downbeat
Hi Andy,
No apologies needed - this is the place to share both the positive and the negative.
Re your left eye, have you told your optometrist about the issues you're having with the lens? And it's often useful to make an appointment for a time when you know that things are likely to be worse (afternoon in your case) so that the optom can actually see what's going on rather than you just telling them about it.
Are you still having your KC monitored at a hospital eye clinic? If not, it sounds like you need to have a specialist look at your right eye to confirm whether it is developing KC. And if it is, then this might be the point to ask about CXL to stop any further progression. I think you're in the Liverpool area, so not far from one of the hospitals that offers CXL on the NHS.
I hope that's some comfort - there are things that will hopefully help so that none of the dire things you're imagining come to pass.
No apologies needed - this is the place to share both the positive and the negative.
Re your left eye, have you told your optometrist about the issues you're having with the lens? And it's often useful to make an appointment for a time when you know that things are likely to be worse (afternoon in your case) so that the optom can actually see what's going on rather than you just telling them about it.
Are you still having your KC monitored at a hospital eye clinic? If not, it sounds like you need to have a specialist look at your right eye to confirm whether it is developing KC. And if it is, then this might be the point to ask about CXL to stop any further progression. I think you're in the Liverpool area, so not far from one of the hospitals that offers CXL on the NHS.
I hope that's some comfort - there are things that will hopefully help so that none of the dire things you're imagining come to pass.
Re: Feeling downbeat
Anne Klepacz wrote:Hi Andy,
No apologies needed - this is the place to share both the positive and the negative.
Re your left eye, have you told your optometrist about the issues you're having with the lens? And it's often useful to make an appointment for a time when you know that things are likely to be worse (afternoon in your case) so that the optom can actually see what's going on rather than you just telling them about it.
Are you still having your KC monitored at a hospital eye clinic? If not, it sounds like you need to have a specialist look at your right eye to confirm whether it is developing KC. And if it is, then this might be the point to ask about CXL to stop any further progression. I think you're in the Liverpool area, so not far from one of the hospitals that offers CXL on the NHS.
I hope that's some comfort - there are things that will hopefully help so that none of the dire things you're imagining come to pass.
Thanks for the response. I have an appointment at the countess of Chester on Wednesday. I'll be sure to discuss my issues with my left eye. I'm not sure if my right eye is having an issue. It's generally fine but when I see white text on black I get the halo effect but not really wth other colours.
I am just a bit down about it all. Wouldn't having cross linking leave me out of work for a week or two?
I know it could be worse (I could be going blind!) but losing my acuity is just so depressing. I really enjoying playing video games and feel that KC will limit the amount of this I can do.
- Matt_Offord
- Contributor
- Posts: 13
- Joined: Sat 16 Jan 2016 10:37 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Feeling downbeat
Hi Andy,
I hope it goes well at the Countess. Its quite understandable to be worried, especially during this stage when you don't really know too much about the situation. I am sure that the truth about both eyes will emerge and then at least you will know where you are at. I too thought my livelihood could be at risk when I started and although my left eye was bad, the right, like yours, was a bit touch and go. Although my right eye was much better than the left, it was still a source of uncertainty, so I know how you feel.
A lot of it comes down to getting used to lenses, developing your own routines and finding out what works and what doesn't. When I first started using RGPs, I could not tolerate them for more than half an hour and I couldn't leave the house on a sunny day. Now I wear them all day.
Hang on in there, I am sure you will get it sorted out, it might just take a while!
I hope it goes well at the Countess. Its quite understandable to be worried, especially during this stage when you don't really know too much about the situation. I am sure that the truth about both eyes will emerge and then at least you will know where you are at. I too thought my livelihood could be at risk when I started and although my left eye was bad, the right, like yours, was a bit touch and go. Although my right eye was much better than the left, it was still a source of uncertainty, so I know how you feel.
A lot of it comes down to getting used to lenses, developing your own routines and finding out what works and what doesn't. When I first started using RGPs, I could not tolerate them for more than half an hour and I couldn't leave the house on a sunny day. Now I wear them all day.
Hang on in there, I am sure you will get it sorted out, it might just take a while!
- Lia Williams
- Moderator
- Posts: 487
- Joined: Thu 16 Feb 2006 5:27 pm
- Location: Surrey
Re: Feeling downbeat
andypeers wrote:I also don't know how to cope if I lose a lens or get an eye infection.
It is always worth having a spare lens just in case you lose one. I bought my first set of spare lenses when I realised that if I lost one I would have big problems as I could no longer see adequately through my glasses. These days my spare lenses are usually the previous set which I could use while a new one is ordered.
As for infections the best policy is to take great care with cleaning and handling lenses to minimise the probability of getting an infection.
Lia
-
- Forum Stalwart
- Posts: 578
- Joined: Mon 20 Apr 2009 9:04 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Feeling downbeat
Hi Andy, no apologies needed for struggling and feeling low, most of us do at different points, it is frightening.
I've been an RGP wearer for all my adult life and I've never had an infection (and I use makeup). Just be scrupulous with hand washing and touching your eyes, cleaning your lens, rinsing and drying your case and replacing your case every 3 months. I always have a 'flush out' of the eye with artificial tear drops like Hypromellose before putting the lens in/taking it out, and keep it hydrated throughout the day with lubricants. When I have to take it out because there's mucus or grit under the lens and it's hurting, I flush it out and wait till there's no discomfort before cleaning/reinserting the lens. Try not to over wear the lens, our eyes let us know when its had enough, and as Lia said buy a spare and like Lia when one breaks or the optom replaces it I keep my old one as an additional emergency spare, but always have a new pristine spare. The other thing I learn recently is that a new lens can sometimes be uncomfortable if it's 'too polished' and it takes a while for the eye to settle, plus with RGP's cleaning them flattens them out a bit so a new lens is always more curved and the cornea takes a bit of getting used to it.
I hope you get further clarification soon, take care Lou
I've been an RGP wearer for all my adult life and I've never had an infection (and I use makeup). Just be scrupulous with hand washing and touching your eyes, cleaning your lens, rinsing and drying your case and replacing your case every 3 months. I always have a 'flush out' of the eye with artificial tear drops like Hypromellose before putting the lens in/taking it out, and keep it hydrated throughout the day with lubricants. When I have to take it out because there's mucus or grit under the lens and it's hurting, I flush it out and wait till there's no discomfort before cleaning/reinserting the lens. Try not to over wear the lens, our eyes let us know when its had enough, and as Lia said buy a spare and like Lia when one breaks or the optom replaces it I keep my old one as an additional emergency spare, but always have a new pristine spare. The other thing I learn recently is that a new lens can sometimes be uncomfortable if it's 'too polished' and it takes a while for the eye to settle, plus with RGP's cleaning them flattens them out a bit so a new lens is always more curved and the cornea takes a bit of getting used to it.
I hope you get further clarification soon, take care Lou
Re: Feeling downbeat
Hi all
Thank you for your responses. I'm sorry for not replying sooner.
I had my appointment and that lady I saw referred me back yesterday to have the topography done on my eye.
The gentleman who did it was really nice and did the eye test with the glasses and different lenses. (I hate that as I can never decide which lenses are better or worse!)
Anyway long story short he said my eyes haven't changed since last April they did it. He did try me with a more coned contact lens for my left eye and said it sat better in my eye so they're going to order me a new lens. I guess I'll have a spare now
Anyway he basically said that me right eye hasn't changed which was such a relief
Thanks for the support. Just thought I'd give an update incase anyone finds this thread and wants to know how it resolved
Thanks again everyone
Thank you for your responses. I'm sorry for not replying sooner.
I had my appointment and that lady I saw referred me back yesterday to have the topography done on my eye.
The gentleman who did it was really nice and did the eye test with the glasses and different lenses. (I hate that as I can never decide which lenses are better or worse!)
Anyway long story short he said my eyes haven't changed since last April they did it. He did try me with a more coned contact lens for my left eye and said it sat better in my eye so they're going to order me a new lens. I guess I'll have a spare now

Anyway he basically said that me right eye hasn't changed which was such a relief
Thanks for the support. Just thought I'd give an update incase anyone finds this thread and wants to know how it resolved
Thanks again everyone
- Anne Klepacz
- Committee
- Posts: 2294
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Feeling downbeat
Well, that does sound like a good result - especially finding that your right eye hasn't changed. And I hope the new lens will work out much better. Thanks for the feedback. We do get a lot of people who post a query, get some replies, and never come back to let us know whether anything we said helped! Which must be quite frustrating for people reading the threads later.
All the best
All the best
Re: Feeling downbeat
Thanks Anne
I'm still slightly concerned with my right eye- I still have a bit of a halo effect with white text on dark backgrounds. Maybe it's my eye lens rather than a cornea issue though?
I'm still slightly concerned with my right eye- I still have a bit of a halo effect with white text on dark backgrounds. Maybe it's my eye lens rather than a cornea issue though?
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