Quicktopic posts: Nov 2002

[Anne-Marie Penny]

Robert (Smith)
Thanks for the advice. I think I'm lucky that I've now managed to find an optician who explains everything to me - I understand my condition a lot more now. Like you I have one unaffected eye and one 'off the scale' KC eye. We haven't given up on the lens front. I've now got a smaller lens (to avoid an old scar!) to try.

One funny thing that used to happen was that the lens in my KC eye popped out occasionally. I used to ride a motorbike and if I blinked whilst looking over my shoulder I'd lose a lens!!!

[umbilica@umbilical.demon.]

Tried to post this before and apparently it bounced.
Rosemary


Kate said her vision is still thick fog!

Yeah, quite likely, I'm afraid. If it hasn't started to clear a bit after a month/six weeks, I'd be getting anxious, but it
could well take that long.

As I said, my problem is tht I have very
little vision in my left eye so tht is now straining to work so they both feel sore.

Yes, I had that problem too. that was why I was putting the
lens back in so soon after the third and fourth. But basically I just ahd to make myself take things easier.

Did anyone have their hydrops eye patched
during the day - does it help or should you leave it open to the air? I have to wear one of those really ferching eye shields at night - I have been told it looks as if I am going welding!
The Oxford Eye Hospital casualty people put - well, not a patch, exactly, but a great bandage over my eye and round my head
several times. It looked most dramatic and you can imagine the effect I had going into dinner in college Hall like that! Once I got to see the appropriate specialist (Tony Bron, as per
messages about Oxford Eye Hosp a few days ago), he took it off and said not to bother about it any more. Which I didn't - I think it had more effect in frightening the tutors than in doing anyhing good for the eye......

I don't know why they should have told you to wear an eye shield at night - do you have a tendency to open your eyes when dreaming and get fluff in, or just get the eyes drying out?


Good luck, anyway! Hoe it does clear up well and doesn't hurt too much.


--
Rosemary F. Johnson

[kate]

Thanks for messages about hydrops - basically it seems to be a case of wait and see (I hope!!) I was told to wear the eye shield as a form of protection to ensure that I don't rub it/knock it in my sleep. I don't think I have a habit of sleeping with my eyes open, but who knows!! I go back to Moorfields on 2nd December - anyone else there that afternoon?

[Helen Newham]

Seen the prof today, decided to remove the last 7 stitches, if there not in they cant half come out and induce a rejection. Eye is apparantly a very odd shape, no wonder i couldn't see the first letter! I have to return to hosp next Thurs , and after my eye has settled down , will prescribe me new glasses.It feels odd only seeing out of one eye,hope the blur will clear soon.

[sarah marsh]

hello all,
well today i had check up with surgeon and good news ! the graf is perfect and could see nearly all the chart, he was very pleased !
i had to have a stitch removed after alot of fuss from me !( im a chicken ) i didnt want it removed and surgeon was very patient with me after he explain how he done it etc, and i still said no, so he cut me a deal! if i agreed to have stitch out he will allow me to go swimming next month (as long as im careful )while on holiday ! so stitc was removed and have to say it didnt hurt abit although i did jump but surgeon was great !
anyway thanx to all who have sent emails and advice on here!
love sarah

[Ray]

Thanks to everyone responsible for putting this website together, a very valuable resource.

I had a graft in one eye about four years ago and might be having one in the other eye soon. Having had one done I thought I knew most of the answers but with another op coming up there seem almost as many and, to my surprise, it’s just as scary. :(

I’ve been without any problems since the first graft but reading about the people who have had rejection problems after 4 years is a tad worrying. Does anyone have any information on what might lead to a rejection? Also, is rejection likely to be confined to one eye or does the body tend to reject both?

The final question (some chance) is if the treatment for rejection is based on steroids, does anyone know the long-term implications of that? The main reason I ask is because a friend of 40 who has had to use steroids over a long period recently needed a hip replacement put down to her use of steroids.

Having said all that, for anyone having a graft for the first time, getting my graft was the best thing I ever did. Just hope that having the second graft is as good a decision. :)

PS Good luck with your graft Sarah. :)

[Clare Feary]

I am due to see an optician soon for a fitting of contact lenses. I am abit concerned because along time ago I wore gas permeable lenses and just did not get on with them. But my consultant has assured me that the lenses that are used now are alot better. Is there anyone out there who uses lenses who could just let me know how they are getting on with them. I am desperate for them to work as I have been told that a graft would probably be the next step if not. This is something I want to avoid at the moment as I have a four year old son and a newborn. So any positive messages would be very welcome!!

[Ray]

Hi Clare,

I'm not really sure if lenses are any better than they used to be, in fact the old non gas-permeable lenses always seemed less likely to dry out to me. The really important thing seems to be to get a good fit and how well the edges are ground. Years ago an optician had several goes at fitting lenses for me and each was as bad. Went somewhere else and they were fine.

They do take a bit of getting used to though. I remember having tears rolling down my face all day but I can wear them now for 16 hours plus every day without even being aware of them. Good luck.

[Anneklepacz@aol.com]

Hi there Ray - welcome to the site. To try to answer your questions - the accepted wisdom is that the longer you go without a rejection, the less likely you are to have one. So if your first graft was trouble free, the chances are the second one will be too. Most rejections occur in the first year after a gratt, and it's unusual to get them several years down the line, though not impossible. I've had grafts in both eyes, and did have rejections episodes in both (never at the same time - they took it in turn). All were successfully reversed, and all happened while I still had the stitches in (my grafts were only 2 years apart). Touch wood, since I had all the stitches out, I've had no further rejections. I don't know of any info about what causes a rejection, though anecdotally, stress can be a factor.
As for steroid treatment, eye drops are much less likely to have a long term effect than taking steroids as tablets or injections, which is the norm for various other health problems. Eye drops have a much more localised effect, so the steroids don't get into the body in the same way (at least that was what I was told when I queried this during my treatment). Taking steroid drops for a long time can have an effect on the eye pressure, but that would always be monitored and action taken if there is a problem.
Hope this helps - do e-mail me direct if you want to chat further (and if you'd like to join the mailing list to get regular info from the group). Good luck! Anne

[hazel]

hi all
i was given this support group by the doctors at the hospital
i have mild keratoconus and have got by with just wearing normal glasses for the past 5 years when i was first told i have keratoconus but today have found out i will be better off with contact lenses which frightens me a little bit because just the thought of something going in my eye
i thnk it is great there is a group like this to which i can turn too if i need any advice