When to graft & does KC return?

[GarethB]

These questions get asked frequently on this forum and every event I have attended by the Support Group the same questions come up, so I thought someone should post something. I will also put this post in a word document to be considered for the next news letter as it may well be of interest for those who do not have internet access.

When to graft?

Firstly, it is a fact that relatively few people diagnosed with KC will ever need a graft and fewer still will require a graft in both eyes.

My personal experience and opinion is that this should be done as a last resort once all lens options have been exhausted. Generally we start off with glasses or corneal RGP lenses of which there are many designs. If comfort is an issue either due to fitting or tolerance (can be a combination of the two), piggy back lenses are used; soft lens on the cornea to be a cushion with an RGP corneal on top or a soft perm which is an RGP corneal lens with a sogt material round the edges. Then there are the Scleral lenses, full size or mini.

To acclimatise to lenses can take weeks or months and can be complicated by our tolerance to lens solutions and the conditions in which we live and/or work.

This is obviously difficult for those immediately round us, parents, brothers/sister, colleagues at work. It can appear that we are suffering, but we are remarkably adaptable and that is sometimes very hard to communicate. We are often prepared to put up with some inconvenience if it means we lead a near normal life.

I think as teenagers when most of us are diagnosed we are very poor at communicating this to parents. Schools and other educational establishments are very good regarding support as are the RNIB. So education wise, we can do as much as everyone else.

The work place is slowly adapting with Access to Work scheme and Action for the blind. I am aware that some organisations are very good and by the same token some are extremely bad.

The only way we can make someone fully appreciate how we adapt is to give him or her KC and this is something we would never wish on anyone.

From a loved ones perspective it may seem that many months or years are wasted trying to find a lens management system that works and that a graft is the 'cure' and perhaps the whole lens issue can and possibly should be bypassed.

The time to graft can be recommended to us, but the correct time is when we feel we are ready for it. As has been proven on this board it is possible to live life partially sighted and has a guide dog. Drew is an excellent example of this and is a great source of inspiration to us all. So is the gentleman I met last year at the midlands group who I understand has a guide dog too.

A graft is far from being a cure; it is a more extreme management strategy. Anyone familiar with needle craft will know how hard it is to sew a round patch on a piece of clothing without any minor creases. The eye is very sensitive instrument when it comes to focusing light, which the cornea does the vast amount of. The lens is just the fine-tuning; this is why many grafts require further correction with glasses or contact lenses.

Therefore, a graft can be considered as a way of making lens fitting easier; be it glasses or contact lenses.

Some of us manage a period of time without sight correction.

The skills required to carryout a graft is much an art as it is a science.

Grafts also take a long time to settle in some cases. Results can vary from the 'miraculous' instant improvement to a long drawn out slog of a couple of years.

Is there then truly a saving to be had by going for a graft straight away?

Sorry but I am unable to answer this.


Will KC return?

In all honesty the chances are extremely remote. This is in part to the improved screening or corneas that are donated, the rarity of KC and the improved mapping of the corneal surface so the surgeon knows how much to replace.

The cases that I have come across are like my own, they are all greater than 10 years post graft, most actually 15 - 20 years post graft.

I have yet to find references to corneal topography being used pre-graft, so as to how much cornea to replace was an educated guess based on experience back then.

Screening has improved and I think the number of people who have joined this site after going for laser eye correction and then finding they have KC backs this up. KC can be detected so much earlier, so the chances of getting a cornea being donated prone to develop KC has been greatly reduced.


Overall Conclusion

The time to graft is down to the patient and is the hardest decision a patient can make in their management of KC. There is no short cut to this point.

KC today is highly unlikely to return, but the bottom line is many of us who have KC are probably willing to take the risk if it means we get for example 10 more years good sight.

I hope this will be of help to those who have KC and for those who live with a KC patient. I would dearly like those people to make comment as we do rely on friends and family for support and I for one would like to encourage them to post so we can understand what they are going through.

The support group is not just for the patient, it is for everyone associated with the condition.

Here endeth the lesson, I look forward to your comments.

Regards

Gareth

[Michael P]

Thanks Gareth. A very helpful and informative post which deals with a topic I think many of us think about regularly.

I believe Moorfields are happy to offer grafts where one's lifestyle has been affected. In my case this was as simple as having to give up tennis and having difficulty in following the flight of my golf ball!

I have always said I wouldn't even consider a graft until I have to give up driving and unfortunately that day may now be approaching.

However, even if that day does arrive I suspect I will then move the goalposts and set myself another landmark before I go ahead with a graft.

By the way it was good to see you yesterday. I too was surprised you were on the Kalibers because I seem to remember drinking a pint for you at the last social.

[jayuk]

Gareth

I am glad you posted that

I was going to put something similar up in its own FAQ section whcih covers many areas......so basically it would be a FAQ section off the discussion board menu....i put the request to John some time ago but I think we now need two Johns! as the work he has to do is probably increasing on the boards!...think Ill buy him a Keg/Barrell of Beer! lloll

But excellent!..because I think many times questions asked and when we reply we do often miss things out etc...

J

[John Smith]

Did someone say beer?

Yes, we are going to have an FAW section quite soon, but there is only little old me here at the moment, and I unfortunately do have other things to get on with, so things don't always move as fast as I'd like.

I'll probably ask for contributions to the FAQ quite soon though.

[jayuk]

Sounds good to me!.....As I think I can probably think of about 8 already!!

[Louise Pembroke]

The only thing I would add to post grafting is that post graft astigmatism can occur and it can be moderate

[Sweet]

Gareth just wanted to say thanks for that! Very useful information there and one which we can direct new members to without reposting the same things!

It is nice to see you posting here as well as i thought that the emoticons in Chit Chat had taken over your head!! LOL!!! As i asked yesterday, are you sure you actually work?!!! ROFL!!!! Though i know you are taking this the right way!!

Hehe

Sweet X x X

[Andrew MacLean]

Thaks Gareth: comprehensive and apt.

Andrew

[Prue B]

For me, I had decided the time was now, and the opthalmologist said the same. I had gotten to the stage I was scared. I only went places I knew, I was having conversations with people I did not know (I just thought they were some one else) walking in front of cars, tripping and missing things. I was still driving but should not have been. But it was constant fear, what would I miss, what embarrasing would I do, would I hurt myself. I see well now and the fear is gone, so for me it was the right time.