UK Keratoconus Self-Help and Support Association

Hello everyone,
My name is Jo, and i live in Melbourne-Australia. I found out that i had keratoconus in both eyes about 3.5 years ago now. It started out just in my left eye, and i got a contact for that eye. That contact never worked out, i think because i didnt go to a good enough doctor. So about a year later i went back to a differernt doctor and he said that it had progressed to both eyes. He had me fitted with contacts in both eyes. the contacts were much more of a success than the first one.
Everything went okay for awhile, but i am always going back to get them re-fitted and re-made etc. because my eye keeps worsening, especially my left eye which is the bad eye. My left eye irritates alot, and is always falling out, i have lost it a few times now.
I see 1 dr in the city for my contacts, and he said that thats it, he cant do anything else to help with the contacts, so he referred me back to another dr closer to me, who does the corneal transplants.
I went to see him today, and he said that it is time for the transplant. He rang the hospital to book a date (there is usually a wait of about 6 months) so i was expecting december sometime. But the hospital said that a donor has become available, and that i can have it done on wednesday, which is only 5 days away. I am happy because i have simply ran out of options and i need it done. But i am also very scared, i have only 5 days to worry about it.
I do not know anyone else that suffers from keratoconus, and so i found this forum in the hope of being able to talk to people who actually know what i am going through. My family are there for me, but they dont fully understand, because they havent been there.

Thanx guys
Jo

Hi Jo,

Have you found our friends at Keratoconus Australia? They're based in Melbourne, I think!

You are very welcome to post here though, wherever you live

Hi Jo

Good to meet you. I am afraid that Keratoconus is usually bilateral, although it is usually worse in one eye than the other.

I am sorry that you seem to hve come to the end of the road with your contact lenses, but what a blessing that you are able to go forward without a prolongued wait.

Many of us here have had a corneal graft. I am now waiting for my second eye to have a grafted cornea, the first was done in 2003.

Do you know what sort of graft they are going to do? (Full thickness or partial thickness).

All the best on Wednesday. Let us know how you get on.

Yours aye

Andrew

Hrmm im not sure about the full/partial thickness... noone has said anything about that?? Its good reading all of your stories on here, and knowing that im not the only one going through all of this, because i havent met anyone with this before. Its nice to know that im not alone.

I checked out the Australian site mentioned above, but i couldnt seem to find an actual forum like this one.. Hrmm, im happy to stick with you guys!

Jo,

Most of us who have been through the graft process has found it to be far less daunting than we ever imagined.

As with any surgery the recovery time varies but I think the key is to keep a postive outlook and the recovery seems to fly by.

Thanx Gareth!!!

its good to hear u have a donor available and i think everyone here understands where your coming from.

welcome to the site

Good luck with the graft.
I had my left eye done at the beginning of december, and I am progressing well.
Everyone is different but pain wise mine was much better than expected, more uncomfortable than pain, as if wearing a really dirty lens. I felt more physically worn out more than anything, probably the effects of the anaesthetic and just needed to sit around with shades on or in the dark for a few days.
Make the most of being able to do very little for a few days and enjoy the rest if you can. Let us know how you get on.

Thanx everyone, your advice helps so much!

I find it interesting, in the rest of the world they seem to be quick to do grafts, but i am told in Canada, the only time they will do one is when the cornea becomes cloudy and scarred. They wont do one even if acceptable vision cannot be attained. I find it odd.