What does 'bad' mean

[Paul Morgan]

I thought that would get your attention!

I do have a serious question to ask/point to make however.

Both my eyes are affected by KC, although my right is infinitely better than my left.

I have always thought that a graft is something that happens to other folk...and hopefully I will be right, but how do I know when I should start thinking about it?

My left eye uncorrected is pretty bloody awful to be fair. I don't know the numbers that many of you often quote, suffice to say that when I went for my last eye test, (2 weeks ago), uncorrected I couldn't read any of the lines. Not even the top one.

My right does compensate pretty well I must say, and in my RGP lenses I get by fine....

So what am I trying ask here? Well I think I'm trying to ask, how bad did your eye(s) get before you contemplated surgery? Don't get me wrong, I'm not keen on the idea, but that eye on it's own is pretty pathetic (even with a lens). Am I heading for the stage where I should be thinking/asking about the next step?

What scares me most is if the right one goes down hill, I could be in real trouble.

Did anyone have any good benchmarks which they used to guide them in terms of levels of eyesight deterioration before they took action?? I admit I'm feeling a bit lost, and don't quite know if I should be talking to my hospital Optom or not.

[jayuk]

Paul

The decision to have a graft is a rather personal one, and is influenced more around your quality of life.

There is an element of risk analysis thats required, which you have alrady done (what if the other eye gets worse, etc).

I have heard of people have grafts when they could see 20/60 with Contact Lenses, and then I have heard of people have grafts when they can not longer see anything barring fingers from 3 inches (Me).

If you get to a stage where

a) You can no longer see aided (with contact lenses

b) Suspect that your other "good" eye is getting worse

c) realise that by NOT having a graft your QOL (quality of life) will deteriorate further

d) have agreement from your eye care team

e) have exhausted all other avenues

f) can afford to have a 12 month recovery period (this doesnt mean 12 months off work! but rather have the patience and surroundings for you let recovery take its course)

Then you may be on the right path to decided for a Graft

HTH

Jay

[GarethB]

Paul,

Remember that by having a graft, the main aim is to have a cornea where it is easier to correct the sight.

My right graft I can not see the eye chart at all. Corrected it is perfect vision.

Left grafted eye, can see first three lines, corrected it is perfect.

Only a small number of people who have grafts live life without sight correction. I think most need glasses, the other corneal lenses like me.

The only one that can say if the time is right for a graft is you.

All we can do here is share our experiences of grafts.

[Alison Fisher]

For me it was an easy decision - but only because there weren't a lot of choices left. They were no longer able to fit me a lens in one eye so that had been 'abandoned' for quite a while, and when my other eye went into 'freefall KC' and was also no longer able to be fitted I didn't exactly have a lot of choices left did I?

That said I did struggle with the psychological aspects of having a graft, and I also seem to have had a lot more post graft pain and discomfort than other people (hence the four year gap between grafts - for a long time I just couldn't face having the second one done), but I went from not being able to see the eye chart at all to within a week of the graft being able to see the fourth line down (that happened with both grafts).

It wasn't easy but the positive impact on my life is immeasurable. It is a risk but when your sight has reached a point where you have little to lose and everything to gain it's one that is well worth taking.

[Sweet]

Just wanted to say that i agree with others here in saying that it is a personal choice and only one that you can make, with advice from your surgeon.

I have never been able to see anything with one eye and so totally relied as you do on the other one. This was all fine for fifteen years until last summer when everything went wrong and i had to have seven months off work not being able to see anything.

So that's when i decided to have a graft done as i couldn't rely on just one eye anymore. Even now after having a graft done and having perfect vision in the other eye with lenses, i have been off sick twice with eye problems. This has just confirmed to me that i made the right choice in having my graft done as my'good' eye is not reliable anymore. Am hoping that when the last two stitches come out that my grafted eye will see well enough to give the other one a break!

Hoping you can work something out soon, Sweet X x X

[Carole Rutherford]

This decision, should it ever have to be made, will be our biggest nightmare. David does not do decisions quite simply because he is unable to make even the simplest of choices. Ask him what he wants for tea and give him two choices an he will reply 'You Chose' People with autism find it impossible to make even a simple decision so where will that leave him?

The implications of all of this terrify me because we will need to find someone who can spell it out in a way that he can understand and truly comprehend what the options and outcomes may or may not be. Autsim is black and white with no room at all for maybes

He to has the KC in both eyes. I am not even off the starting blocks yet and all I can say is with his glasses he can see the first line of the eye chart with his right eye his left is much better, almost to the end of the chart. No lenses so far because his sight keeps changing.

I think that 'I' will need a a course of valium if it ever gets to the point where a decision has to be made. I know that that must sound very selfish.

Carole

[Lynn White]

Paul..

You can't actually go on how bad your eyes are uncorrected. I, for example, cannot see any letters on the chart unless its inches from my face, but I am not KC, "merely" shortsighted and can see fine with specs and contact lenses.

What you need to look at here is the vision with contact lenses and the tolerance you have to wearing them. While your better eye is good, then you do not really need to start thinking about it. If the good eye shows signs of deteriorating (ie contact lens vision seems worse) then you need to start investigating your options which at this stage may well not be grafting at all.

You may have to investigate a different type of contact lens for either your worse eye or both eyes. There is truth to the saying needs must - sometimes not all alternative methods of using contact lenses are explored while good vision is obtained with current methods.

There are also other surgical possibilities such as intacs (and also the less invasive C3) which will probably improve technically over the next few years.

Grafting also depends on levels of scarring and other medical factors such as corneal thickness and so on. Whether you are likely to need one or not depends on other factors such as your progression rate and so on, which only your eye care professionals can advise you about.

If it is worrying you , then the best thing would be to ask your hospital optom at your next visit. He/she has the background information to give you an informed opinion!

Lynn

[GarethB]

Carole,

Perhaps in Davids case it would be concentrating on the positives a graft can bring and what we know he will definitly go through.

1) The injection in the back of the hand is like a small scratch and you go into a nice deep sleep for an hour or so.

2) Waking up he will probably have a bit of a headache and the nurses can help make it go away.

3) He will have to wear an eye patch over his eye which will feel like he has been poked in the eye really badly by Mattew for a couple of days.

4) When playing with Matthew he will need an eye patch or he could have a clear one to protect the graft. Imagine all the fun him and Matthew will have playing pirates and making treasure maps!

5) Eye drops are needed to help the eye heal.

6) As the eye heals he will be able to wear glasses again.

Hope this is not too simplistic, but I have basically described my graft ni the same context as I explained to my daughter what a filling is like and she had no anasthetic for that, so was really scared. She was 5 at the time. Where it would hurt I told her it would and why but always emphasised at least two postives for where discomfort would be felt. Plus I did say she would ahve a treat afterwards. She got a new Barby doll when she got back from school. Being the cruel parent I am, I made her go to school aftre her filling

[asylumxl]

I know how you feel - in my right all i can see is the top line - even thats blurred - and thats with contacts....

the guy who diagnosed me reckoned i will need surgery - my optometrist thinks not - but it seems more and more likely to me anyway.

[Paul Morgan]

Thanks all...I really appreciate your answers.

What would we do without this place to discuss our fears and triumphs!