KC GRAFT

[JAREKANDRACH]

Hi my name is Rachel, my fiance has KC in both eyes, he is only 21 one and has it very serious in both eyes. He is going into hospital on Monday to have the graft on his right eye as we have tryed lazer and contact lenses on this eye and either didn't seem to help!! His left eye is stable for the time being, he wears a soft lens and a hard sense on top that shapes his cornea. His sight is so bad that I have to put these in every morning and take them out every night!!! I must say he is a very good patient and deals with his condition very well- i admire him for how he copes and I couldn't imagine myself in his position.

Anyway, can anyone give me any feedback on how they have recovered from the graft and any tips that we need to follow afterwards?? I would really appreciate the advice!!

Can I also thank the lady who sent all the info packs to me about this condition, they have been really useful!

Thanks to eveyone,

Rach and Jarek xxx

[melissa]

i had a graft 10 days ago. all i can say is that it was better than i thought. try to stay calm before. ask lots of questions. i found it comforting to know exactly what they were going to do- how long it would take etc. i was under general, so once the drip went in, i don't remember anything. i had some sever pain the first few hours after waking up, but they gave me painkillers. my ipod helped me through the hours where the lights are off in the ward, but you can't sleep while waiting for painkillers to work.
when at home i just rested. i found audiobooks a great help. cos i couldn't sleep ALL the time, but generally didnt want to open my eyes.
Good luck

[Andrew MacLean]

JAREKANDRACH

Welcome to the forum

One of the problems that you will both encounter in talking about KC is the way in which the experience varies from person to person. It is so with the condition itself, and it is so of things like recovery from surgery.

I have now had two grafts (right eye in 2003 and left eye in 2006). It took a bit of time for my sight to clear up after the first operation, but I am now able to drive again. My workplace was fitted out with a computer that talks to me so that I did not need to stare at the screen and although I now see very well, I often work 'blind' at my computer without switching the screen on.

Andrew

[JAREKANDRACH]

Thanks for the advice!!

He works as a joiner and has managed to work full time for a couple of years just using one eye- his boss can't quite understand how he manages and does such a good job! He has very understanding bosses and they now know the condition very well and they are behind him 100%.

I think I'm more nervous than him! Just a couple of questions I need to ask-

The guard they put on his eye afterwards will it keep his eye open all night- coz he's worried about that?

How long will he have his stitches in and roughly how many outpatient appointments will be involved?

Will he have a lot of drops?

Will they supply him with a black patch to protect his eye when he goes outside from the light?

Thanks.

[melissa]

well he is lucky to have your support. he will need it.
the guard i was given is a plastic thing that allows you to open your eye underneath as you need to. mine is fixed with tape, and for the first few days i used an oval cotton wool pad underneath in order to keep my eye closed because it felt better that way. now at 10 days i wear a black patch (which i bought at pharmacist) when i am looking at something for long (e.g. Tv or laptop) or if the eye is tired, but i generally go around with nothing. i only wear the plastic guard at night when i sleep to stop me bumping it- the guard doesn't bother me at all, but i think a few other people have complained that they can't sleep with it on.
stitches- this is something that seems to vary ALOT between different cases. it depends what type of stitches are used and how it heals. he or you should ask his doctor about this.
drops- i only have one type of drops- an antibiotic and steroid combination. for the first few days i was using it every hour- then down to every 2 hours and now down to 4 times a day. follow the doctors instructions. for the first few days i woke up in the night needing to take painkillers, and would put drops in then as well.
His eye will probably be sensitive to the light, so wraparound sunglasses are a huge help. i am known to wear them inside...

[Chris Pope]

Hi Rachel,
I also like Melissa had a full thickness graft 10 days ago.
I have had no problems so far touch wood, suffering very little pain and just a little discomfort (even that is very mild considering). My main problems have been with disorientation . Pre op I was completely blind in one eye with perfect vision in the other, since the op I now have some limited vision which seems to be clashing with my good eye, even this is not earth shattering just as a man I feel compelled to complain about something just to keep the sympathy coming.

Drops- Initially I had 6 lots of steroid and 4 lots of antibiotics, after 1 week this was reduced to 4 and 4 for the next few weeks.

Stitches (varies a lot case by case)- My consultant does not sound like he intends to remove mine much before 14 months unless he needs to. I worried that they may be a constant irritation after the op, so far I can honestly say that I have hardly noticed them.

The night guard helps me to sleep better at night knowing that I am not going to knock or rub the eye. You can also open the eye fine with it on without any rubbing.

melissa's adavice about audio books / music is a good one for the first few days, his eyes will just want to rest, I felt mine trying to shut all the time for the first couple of days.

Sunglasses are a must, i even wore them indoors for the first few days. 10 days on and I am now fine and only very slightly sensitive to bright lights. From what i have read others have seemed to have suffered longer with the light so don't worry about that.

If he would like my number to ring drop me a PM and i will send it over, got rush now to watch the football.

Try not to worry too much it will be fine
regards
Chris