UK Keratoconus Self-Help and Support Association

This discussion page is part of the U K Keratoconus Self Help and Support Groups website at. http://www.keratoconus-group.org.uk
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Tony Stigle

Hi Mandy, that's excellent news - I think my appointment is at 11.00 am, after you, so hopefully we can look out for each other - often difficult to do with KC! See you on the 12th. SUE

Dear Emma, I used to wear my rgp corneals from the moment I got up in the morning, until the moment I went to bed, basically all day and every day (approx 17 hrs/day). Although, this is really too long to be wearing them, noone seems to appreciate that with KC, you cannot just take your lenses out to give your eyes a rest and just carry on as normal. After 25 years, I think my left eye has decided to give up - I cannot wear the left lens all day now. However, Ken Pullum at MEH, came to the rescue and I now have scleral lenses too. My vision is not so good with them, however, I wear these for half the day and my rgp corneals for the other half. This means my eyes do not get so tired, sore, itchy, blocked-up with mucus etc, etc. I now have a choice. I am not sure whether this will be possible for you, but all KC sufferers should be trying to get some alternative in order to give their eyes a rest. After all, we cannot just put on glasses instead of wearing lenses, can we? SUE

Dear Emma, I have recently been fitted with scleral gps by Ken Pullen. The new lenses are adjusted to reading as I was increasingly wearing reading glasses as well as my old pmma scleral lenses. I am certainly getting longer wear from the gps but don't get the same sort of message to remove them. I also find that I still need to wear the pmma lenses if I am outside eg on country walks. I can only get at max. 4 hours form the pmma lenses compared with 6 to 9 from the gps. So there is an improvement, but I am lucky that my left eye is not quite so badly effected enabling me to have a break if I'm having a lazy day. Ken's predecessor always reckoned my eyes were in such good condition because I did not push wearing times to extremes [that was with the pmma lenses]I don't yet know about these new ones although my eyes do seem rather bloodshot when I remoe them

So it's come to this...

I've now got my appointment (10th Jan) to have my right eye grafted. I can't drive any more, as I'm virtually blind in the right eye, and vision is too poor now with the left.

Does anyone have any questions they'd like me to ask; or does anyone have any advice to help me get through all this?

Surely, it can only be an improvement; but nonetheless, it's an operation that I'm especially squeamish about.

John

John I was in the same position as you 11 years ago and after the graft with a few problems it changed my life back to normal. I can read the bottom line of the chart.Put into perspective that the majority of people with grafts out their have complete success and hence don't bother with sites such as this to seek advice. The odds are in your favour

Dear Kristian, I can understand your frustration, but need more information. You can find my e-mail address on this site,on the local contact page under SE region.
Amanda stigle

Dear Freddy, glad that you are back with the sighted!
Amanda

> From: QT - John Smith <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
> Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
> Date: Wed, 5 Dec 2001 16:08:24 -0600 (CST)
> To: janetmanning@lineone.net
> Subject: Keratoconus
>
>
< replied-to message removed by QT >

Dear John

There must be some sort of synchronicity here - I am due to go in on Jan 9 for a graft to my left eye! I am also squeamish and not looking forward to it but heartened by Ian Pearson's reply.

I am luckier than you in that my right eye is still very good and I am able to lead a normal life (including driving). However my left eye is just about useless now. Do keep in touch about your progress if you can.

Robert

Thanks Ian for your kind encouragement. When I have bouts of being logical, of course you're right. And I've found that being as open as possible certainly helps me to get through it.

And Robert, best of luck for your Op. Hopefully, your right eye will still be good in years to come. Unfortunately, i was in your position for some time, then the KC in my left eye seemed to get worse very suddenly, leaving me like this.

Still, only just over 4 weeks to go, and at least we can enjoy Christmas!

Keep in touch (and I will!)

John

Dear John,
I had grafts in both eyes in 1999, so can relate to your feelings. It's been a long haul, but I can now see better than I have for 12 years. It's definitely worth it. I can even drive at night!!

I had local anaesthesia and the anticipation was far worse than the reality. You only see bright lights and shadows. I was home within an hour of coming out of theatre.

I would have coped better with more info before hand. If you would like to talk in more detail, please phone on 01235 528974.

All the very best for the op. Will be thinking of you.
Janet Manning