Quicktopic posts: Nov 2002

General forum for the UK Keratoconus and self-help group members.

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Amanda Stigle

Postby Amanda Stigle » Fri 15 Nov 2002 5:11 pm

Dear Helen.
Sorry that you are going through graft rejection. I have not personally had a graft but rejection can be reversed. We have had several people with KC who had graft rejection that was successfully reversed with antibiotics and steroids, one was fairly recently.
Hopefully they will see your message and reply. Good luck, and we are here if you need to talk.

Helen Newham

Postby Helen Newham » Fri 15 Nov 2002 5:32 pm

Dear Amanda,
Thank you for your assurance of hope I feel a bit better already. Do not go back to Hosp until Monday so will find out then what stage I am at.
I did not realise how many people suffered with K , and am quite shocked I thought it was rare.
It has opened my eyes a bit, no pun intended..
Thanks again
Helen
>
< replied-to message removed by QT >

Jas Rihal

Postby Jas Rihal » Sat 16 Nov 2002 2:32 am

What are the experiences of people who drive, especially at night? Naturally jobs/livlihoods depend on driving to and from work, what can you do? Any thoughts...

John Smith

Postby John Smith » Sat 16 Nov 2002 6:24 am

> From: Helen Newham Time: 03:57 PM
> I am a worried sufferer,had a cornea graft 4 years ago and on
> 11/11/02 it started to reject out of the blue, sight was good
> before , pretty scary at the mo, I 'mon Maxidexhourly ,and
> ciloxan 2 hourly, + one drop to dilate the pupil, Was just
> hoping if anyone could offer some tips or support, to reassure
> me a bit or anything really.


Hello Helen,

I'm very sorry to hear about your rejection episode. I had a graft back in January, and a rejection in September. I was first put on zovirax (anti-herpes) cream "just in case" it wasn't a rejection. Two days later, I was confirmed as rejecting, and back on hourly Maxidex drops. That lasted a week, then on to Maxidex every 2 hours for another week, and then to four times a day. (reducing by one drop per day every month).

I'm also on Timolol drops because I had problems with high eye pressure caused by the Maxidex.

I'm very pleased to say that all is well again; the rejection is well and truly stopped, but the corneal surface is a sligthly different shape to what it was. Luckily, it's now slightly less astygmatic although slightly more short-sighted; so it's a new pair of glasses time.

My rejection was classified as "surface level" rejection only. I think that means that it was caught early; certainly before I'd noticed any change in vision. Hopefully, yours is too.

Hope this has helped you, and best of luck for Monday. Let us all know how you get on, and if you want to have a private chat, feel free to mail me on john@roundel.net.

John

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Sat 16 Nov 2002 9:33 am

Helen said, about her son:

However at first he was not wanting to take them out and perhaps wore them for longer than he should, despite my protests. Last couple of days though he's said his eyes have been itchy, and
today that his right (worse) eye was hurting so that he had to
take them out. We're due back at hospital next week,but as I've never worn lenses I wonder if these sort of experiences are
common while getting used to them?

Yes, that sounds very typical! - if one keeps the lens in for
too long, one gets sore eyes.

I've been wearing lens for, oh, about 26 years now, and I still
find if I leave the lenses in too long, my eyes get sore. In
fact, I often find that there is a "delayed action" effect - the worst of the soreness can come a day or two later.

Also, I find that how long is "too long" varies a lot - it is
*usually* longer than the half-an-hour-at-a-time of the first
week I had them. But the wearing time can be reduced quite
markedly if I've got a cold - or in some weather - or I'm over
tired - or got a hangover (not that I ever get those, you
understand!!!!) - or been spending too long looking at a
computer. Well, by all sorts of things, really. The secret is
to learn how to tell when your eyes have had enough, and take
the lenses out.

Hope your son's eyes recover soon and he's back on track with
the lenses. I find mine do recover if I make them sore from
over-wear - I just have to rest them for a couple of days.

Rosemary
--
Rosemary F. Johnson

Helen Newham

Postby Helen Newham » Sat 16 Nov 2002 10:41 am

Dear John,
Thank you all these episodes of recovery are reassuring.
I was already on Timoptol 0.5% twice daily and Xalatan at night ,for pressure in the eye. I was told Glaucoma was a side effect from the op, and My Grandmother has glaucoma anyway( nearly Blind from it not caught in time) so it ran in my family anyway.
So it sounds like i'll be on these glaucoma drops for a while yet if the steroids increase it.Probably be on drops for life.
The suspense of not knowing what is happening is driving me mad , I wish it was Monday now.
Love Helen

mark coulthard

Postby mark coulthard » Sat 16 Nov 2002 5:30 pm

I am 17yrs and have KC in both eyes. I am awaiting corneal graft planned for December this year.I suffer from hayfever and have been advised to commence steroids orally for 3 months after my operation. Can anyone identify with a similair situation and if so was their donor matched to their eye tissue prior to surgery.If not matched, was it still successful

John Smith

Postby John Smith » Sun 17 Nov 2002 6:55 am

> I was told Glaucoma was a side effect
> from the op, and My Grandmother has glaucoma anyway( nearly
> Blind from it not caught in time) so it ran in my family anyway.
> So it sounds like i'll be on these glaucoma drops for a while
> yet if the steroids increase it.Probably be on drops for life.
> The suspense of not knowing what is happening is driving me mad

Hi again,

I know all about that! I know it's difficult, but try and relax and not get too stressed. It sounds like you're in good hands, so learn to trust your consultant and you'll probably be slightly less stressed out. Certainly I found that my stress levels went right down when I found this group, and someone to talk to! (Thanks again, one and all!)

Best of luck for tomorrow.

John

kate

Postby kate » Sun 17 Nov 2002 3:03 pm

I haven't contributed to the discussion page for ages as my computer was out of action - some horrible virus which I did not want to pass on to any of you! Jowever I need your help or reassurance..... Last Monday I was diagnosed as having acute Hydrops in my right eye. As those of you who have suffer a hydrops not only is it uncomfortable, but it is also like looking through thick fog. My added problem is that I have very little vision in my left eye, although what vision I do have has been maximised by Ken Pullum and a scleral! As you can imagine this makes reading almost impossible - a bit of a problem as I am a headteacher!! Thankfully I have made use of my contacts at a local school with a unit for visually impaired, and have mamaged to borrow various devices to make reading just about possible. However what I really want to know is when does the hydrops start to clear? How long did it take for any of you for it to clear completely? I have to say I was really impressed by the A and E de[artment at Moorfields, and I am going to see Prof Buckley in a couple of weeks.

Janet Manning

Postby Janet Manning » Mon 18 Nov 2002 8:02 am

Hi Mark,
I had a grafts in both eyes in 1999 and also get hay fever. Through the necessary use of steroid drops after the ops I had a great hay fever season with very little problem. Sometimes the eye not receiving steroid drops would run a bit, but nothing too serious. Normally both would be streaming! Now I have scleral lenses they seem to keep the pollen out of my eyes, so I can even manage to wear lenses during the hay fever season. So I doubt you will need oral steroids post op. You could always try without and if you run into trouble they are there as a fall back position. Alternatively, why not try other ways of controlling your hay fever e.g. homeopathy?
If you would like to chat, please mail me on:-
janetmanning@lineone.net
Good luck,
Janet
Good Luck


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