Quicktopic posts: Mar 2003

[Louise Pembroke]

Thanks Rosemary, but I have flaked out I'm afraid...
Ash, I don't think I did put lenses in after my hydrops but don't go by me alone. The first was severe so left scarring, the second was minor but my KC was going off the scale by that point so lenses would not sit on the eye. There's still every chance you will be able to.
My hydrops occured during the night with no warnign whatsoever, I woke up and thought there was something in my eye, as I ran my finger across it I could feel a protruding mass. With the second in my other eye, it was much less dramatic, I noticed the characteristic spot of clouding and took myself to the hospital and told him my diagnosis which he then confirmed. I don't believe it is inevitable that if you have a hydrops in one eye that it means you will automatically get it in the other eye. As I understood it, it was related to the very steep curvature of my cornea which for me was visible to the naked eye from side view. So don't assume it will happen to your other eye, it's not a forgone conclusion. I did have grafts to both eyes yes, the first one turned out very well, no hitches at all. There is a steep curvature still with this cornea but it can be corrected with a rigid gas permeable lens which I've worn for years. The difference the lens makes to my visual acuity is huge, without the lens, I'm stumbling, with it, I can see down to the bottom of the alphabet board. The other eye didn't turn out quite so well, I did have episodes of rejection shortly after surgery but it has been stable for 10 years now. There is a slightly higher chance of rejection occuring in a second graft it seems. The vision in that eye is not good, but that's not purely down to the rejection epsiodes I had, I had other complications too. I can't see the alphabet board with that eye, but having vision concentrated in one eye is fine.

[Louise Pembroke]

Suggestion to all KC patients/members

I've been thinking, wouldn't it be great if some of us set up a KC 'Buddy Support' system whereby people would offer a bit of time where possible to visit a new graftee in hospital or accompany someone to an appointment which is causing anxiety ie stitch removal, contact lens fitting, suspected rejection etc. Obviously we could only do this in our own areas. For example Moorfields is very close to me, easy for me to access. When I was a teenager there was no support at all, I had noone to talk to, and there's nothing like having a cup of coffee and a 'debrief'with someone who knows what it feels like. Sometimes just having someone wait with us in the clinic can be helpful if we are having a hard time. What do you think? Should we discuss this further at the conference?

[Gillian]

Louise - what a good idea. Let's discuss this at the conference and possibly have a brainstorming of how best to manage a 'buddy' system.

[Paul Bines]

Just to let you know - I'm due to go in to Southend Hospital on Tuesday 25th for my left eye regraft! Rather short notice, but a matched eye came up (there are no end of jokes that could be made at this point, I'm sure!) and so I was called!
All things being equal I'll have reasonable sight in both eyes for teh first time in about 12 years!
Au REs.,
Paul

[Louise Pembroke]

Hi Gillian, yes I'd like to do that

[Ian]

Rob,

Re: Sunglasses - I've personally found polarised to be better as they cut down on the amount of glare and tend to work well even in lower light conditions - i.e. sunset.

A good example is when following a car on the motorway in bright sunshine - perhaps its reflecting badly from the back windscreen - put on the glasses and not only does the reflection go but you can now see right through the car!

Cheers
Ian

[Helen Royston]

Hello everyone,
I wear the RGP lenses but have bouts of terrible itching and 'dry eye' by that I mean it feels like there isn't any liqiud in the eye and lenses feel like they're about to pop out, does any-one have any suggestions on how to sooth the eyes when this happens, I'd be most greatful for any help!

[Ash]

hi louise!! sorry to go on about the hydrops, but how long was it before u suffered the second hydrop after the first one?? so let me get this straight, if u have a graft in one eye it makes it more of a risk to have one in the other eye?? why is that?? does the other eye not have just as much success rate as the other eye??

do you not wear an RGP lens for the bad eye??

Thanx Ash

[John Smith]

Hello Helen,

> I wear the RGP lenses but have bouts of terrible itching and
> 'dry eye' by that I mean it feels like there isn't any liqiud in
> the eye and lenses feel like they're about to pop out, does
> any-one have any suggestions on how to sooth the eyes when this
> happens, I'd be most greatful for any help!

This used to happen to me a lot, and I was advised to use Allergan's "Refresh" or "Revive" drops (the name's changed, but I don't remember which is the new one!).

The drops are in disposable vials, but that means there is no preservative that could cause stinging.

Good luck,

John

[Sue Ingram]

Hi Paul (1525), Good luck with the op - let us know how you get on once you can get back on a pc again. Take care. SUE