a Question

[Anne B]

If you have grafts in both eyes do you still have KC?

I know it can return (very unlikely) but untill that happens do you have KC?

[Anne Klepacz]

Oh dear! I've finally been rumbled! What am I doing on the committee of this organisation when I don't have KC (grafts in both eyes)?! I guess the answer is, no we don't have KC, but most people post graft will still need correction with either glasses or contact lenses, and will need to have their grafts monitored each year (for ever!) to check that all is still well. So I think we're honorary KCers, and having been there, done that, can hopefully share our experience with others. So don't desert us just yet!
Anne (K)

[Anne B]

LOL no what i was thinking and this is just how i feel. Is when i have my second graft i can change my profile to say that i haven't got KC but i have had two grafts.

Because i won't have KC anymore HIP HIP HOORAY

[GarethB]

To be honest I feel we still have KC.

Grafts/transplants are not a cure as the disease has not been eradicated and there is the potential for it to return as has happened in my case. With new technology the chances of this occuring is far less.

Admitedly many post graft with lenses or glasses live life as if they have been cured which is excellent.

Technically it is long term management treatment for KC

[Anne B]

OK i'm going to try and get my head round this!

If you have a graft and like i was told the KC has been removed, then i don't have KC in that eye anymore. If i have a graft in my other eye and the KC is removed then i don't have KC in either of my eye's.

I may still have the triggers in my body to cause KC to return but those triggers are not KC in itself (are you with me)So then i still don't have KC

Answer this for all those that have had both eyes grafted. If you were asked about your medical history would you say that you "HAVE KC" or that you" HAD KC but it has been treated with grafts"

I don't want this to sound like i am getting at anyone, just trying to work it out.
When i was told the KC had been removed i felt great still couldn't see very well at the time but it changed my state of mined instantly.

Please tell me what you think

[Andrew MacLean]

I'm with Gareth.

It may be hoped that the grafted tissue does not have Keratoconus, but the grafted tissue has been sewn into an eye that does.

People with bi-lateral grafts do, therefore, have Keratoconus, although it may be sub-clinical for the rest of their lives.

Andrew

[Anne B]

I don't really have the knowledge to carry this on, but i will carry on with my cup is half full approach. It makes me feel better.
It's lovely in Annes world

[GarethB]

Anne

As far as I am concerned, firstly if grafts mean you no longer have KC then we all would be getting them at point of diagnoses and secondly grafts would mean we no longre needed any vision correction.

In my left eye, there is no KC reoccurance yet it still needs treatment as if it were still a KC eye. Right eye grafted, KC reoccured and mananement as others with KC just like my left eye.

KC never been cured, graft just menat when lenses were no longer viable, it allowed the condition to be managed for a longer period.

Since first diagnoses I have always declared that I have KC, even post graft prior to it coming back I still declared that I have KC, its never been past tense.

[Anne B]

Garet, People would not be getting Grafts as soon as they were diagnosed because they still carry the same risks (i'm not that stupid)
And surely after a graft if you still need correction you are no worse off then someone who has bad eyesight and needs glasses/contact lenses. I have 2 friends that cannot see a thing without correction. Its becoming a bit of a joke that i am going to end up seeing better than them (i think they will be heading for laser treatment when that happens )
Can i ask you to explain why your eye that has not had the reccurance of KC is still treated as if it had KC?
Once again i will point out that i'm not trying to upset or be on anyones case i'm just working things out (it could take sometime )

[GarethB]

Anne

I think you trying to work things out in your own head is helping others do exactly the same thing.

Main reason left eye with no KC reoccurence yet is down to cost. It is cheaper to have a pair of lenses on the NHS. The cheapest glasses for that eye alone last time were £150, three times the price of the lens. Secondly the vision is far better and more predictable with a lens.

Roughly speaking half the people I know post graft have contact lenses, the others glasses. Those with contact lenses are treated in exactly the same way they were pre-graft.