Terrified... advice please!!
Posted: Tue 27 Jan 2015 11:50 am
Hi everybody
Just wanted to introduce myself... Apologies for the slightly dramatic subject line! New to this forum and wanted to tap into your combined wealth of experience and advice...
Just a bit of background on my situation. Was diagnosed with KC about 14 years ago, aged 13. My right eye was quite affected but my left eye had very mild KC so my vision was fairly good. However, my right eye couldn’t be corrected with glasses or soft contacts, so I persevered with gas permeable lenses for a couple of years during my teens, on and off. I suppose I didn’t really appreciate the prognosis of implications of this disease- I was teenager and I could see fine without my contact lenses so I had little incentive to keep trying with them. After a few years at around 16 I eventually gave up, and I’m very ashamed to say I didn’t really think about my KC for the next 10 years! I wore my glasses most of the time, visited the opticians for them so figured if anything serious came up they would know, and although I guess I was vaguely aware my right eye sight was getting slightly worse, and I had terrible night vision – halos and ‘ghosting’, I just sort of accepted it..
I only started thinking about my KC again about a year ago when I having a medical for my second year visa in New Zealand. The doctor tested my eyes and my right eye’s vision was at 20/200 – pretty ridiculous. I couldn’t even see the screen, let alone the letters. The doctor was astounded I wasn’t having treatment for my KC- which obviously made me feel so stupid and irresponsible for going so many years without seeing a specialist. But as I say, given I can see fine, obviously not perfect, but fine, it was just never something I gave much thought to. And I suppose as time went on and I was still fine, I just thought it must have stabilised. Anyway, fast forward 6 months, I was back in the UK and asking for a referral back to the eye clinic.
I had my second consultation yesterday (the first was just a confirmation of what I already knew- that I had kerataconus and needed to see a corneal specialist!) and it was so much more distressing than I was anticipated! I went along expecting to be fitted with new contact lenses, instead I was told my right eye is now ‘advanced KC’, has corneal scarring and stretching, and is most likely too advanced for contact lenses to work. The consultant also added that it was almost too advanced for corneal cross linking, but I was still eligible so she’d put me forward straight away. After that, we’d need to look at possible corneal rings to correct my right vision. Luckily, my left is still only mildly affected, even after 14 years.
Obviously, I’m really upset with myself for letting so much time go by without really doing anything. I’m also so scared for the future now- I understood that corneal transplants were only needed in 20% of cases? But it’s the not knowing that is so concerning- will I need a transplant? Will my left eye ever deteriorate? What if the corneal cross linking doesn’t work? What if a transplant didn’t work? Just so many questions! And my main concern is, if a transplant failed, would I go blind?? Has anyone ever gone blind from KC??
Apologies for the rambling dictation of my thought process, but am pretty terrified at all this new information and despite trawling the internet for information, I’d love some advice from fellow KC-sufferers who’ve been through it themselves.
Thank you!!
Carli xxx
Just wanted to introduce myself... Apologies for the slightly dramatic subject line! New to this forum and wanted to tap into your combined wealth of experience and advice...
Just a bit of background on my situation. Was diagnosed with KC about 14 years ago, aged 13. My right eye was quite affected but my left eye had very mild KC so my vision was fairly good. However, my right eye couldn’t be corrected with glasses or soft contacts, so I persevered with gas permeable lenses for a couple of years during my teens, on and off. I suppose I didn’t really appreciate the prognosis of implications of this disease- I was teenager and I could see fine without my contact lenses so I had little incentive to keep trying with them. After a few years at around 16 I eventually gave up, and I’m very ashamed to say I didn’t really think about my KC for the next 10 years! I wore my glasses most of the time, visited the opticians for them so figured if anything serious came up they would know, and although I guess I was vaguely aware my right eye sight was getting slightly worse, and I had terrible night vision – halos and ‘ghosting’, I just sort of accepted it..
I only started thinking about my KC again about a year ago when I having a medical for my second year visa in New Zealand. The doctor tested my eyes and my right eye’s vision was at 20/200 – pretty ridiculous. I couldn’t even see the screen, let alone the letters. The doctor was astounded I wasn’t having treatment for my KC- which obviously made me feel so stupid and irresponsible for going so many years without seeing a specialist. But as I say, given I can see fine, obviously not perfect, but fine, it was just never something I gave much thought to. And I suppose as time went on and I was still fine, I just thought it must have stabilised. Anyway, fast forward 6 months, I was back in the UK and asking for a referral back to the eye clinic.
I had my second consultation yesterday (the first was just a confirmation of what I already knew- that I had kerataconus and needed to see a corneal specialist!) and it was so much more distressing than I was anticipated! I went along expecting to be fitted with new contact lenses, instead I was told my right eye is now ‘advanced KC’, has corneal scarring and stretching, and is most likely too advanced for contact lenses to work. The consultant also added that it was almost too advanced for corneal cross linking, but I was still eligible so she’d put me forward straight away. After that, we’d need to look at possible corneal rings to correct my right vision. Luckily, my left is still only mildly affected, even after 14 years.
Obviously, I’m really upset with myself for letting so much time go by without really doing anything. I’m also so scared for the future now- I understood that corneal transplants were only needed in 20% of cases? But it’s the not knowing that is so concerning- will I need a transplant? Will my left eye ever deteriorate? What if the corneal cross linking doesn’t work? What if a transplant didn’t work? Just so many questions! And my main concern is, if a transplant failed, would I go blind?? Has anyone ever gone blind from KC??
Apologies for the rambling dictation of my thought process, but am pretty terrified at all this new information and despite trawling the internet for information, I’d love some advice from fellow KC-sufferers who’ve been through it themselves.
Thank you!!
Carli xxx