UK Keratoconus Self-Help and Support Association

Hi guys, I am 28 and I was diagosed as KC when I was 12 (I think) since then my eyesight has deteriorated quite steadily, around 5 years ago I trid RGP lenses but night driving was worse in the than with my Glasses so coupled with having great difficulty getting the things in and sitting correctly I quickly gave up on them. My Dad has KC and has had grafts done on both eyes around 30 yrs ago and has recently needed to have them regrafted. The first went fine, but the second rejected, he was then tissue matched, that rejected, he was then matched again and that rejected and currently he has no vision in that eye and is in absolute agony 24/7.

So my question is this. I have been on the waiting list to have a graft on my left eye and my "slot" has finally come up. I am very nervous about getting a graft so "young" after seeing what's happened to my dad 30 yrs later. The eyesight in the eye isn't great but I can live with it and my eyesight in my right eye is pretty good (with the glasses). What do people think about me delaying the graft and going to the bottom of the waiting list again??

Sorry this seems long winded, but my mind is going at 100mph over this subject

Chris,

Talk to your consultant about a DALK graft - which your Dad wouldn't have been suitable for at his regrafts.

The nature of DALK preserves the enothelial layer of the cornea, which is not usually affected by KC, and is the bit that most commonly rejects. A DALK graft by its very nature is almost free of the risk of rejection. The risk reduces further if you have a donor cornea that has been freeze-dried.

Hi Chris

Welcome to the forum.

Sorry to hear what you Dad has been through.

I had my grafts when I was 18 (nearly 20 years ago) and all is fine.

Research post graft beyond 10 and 20 years is limited. This question ahs been asked at the groups confrence in 2005 and the 2006 AGM and the guest consultants have both said that the survival rate of a grafted cornea beyond 20 years is about 80% so the odds are definitly in your favour.

It is quite possible when your Dad had a graft that like me he was told it was a cure when really it is a long term management strategy.

There are several people here who have decided agains grafts for whatever reason and now have a guide dog and have extremely fulfilled lives.

To be honest no one here will give you a straight answer because at the end of the day it is your decision. All we will do is share our experience.

In my case something rarer than rejection occured in the KC came back in the ungrafted cornea but technology has moved on and I can see as well as I ever did with contact lenses.

My understanding is that those who have a graft only a relativly small percentage suffer rejection and most that do find it can be managed.

Please note that although this forum has many users many of the regular posters have the more extreme cases of KC.

So anynoe reading this who feels there KC is nothing compared to others posting here, please post as all information will be of help.

Hope this gives you some food for thought.

Regards

Gareth

Thanks for your quick responses.

Gareth, you say that your KC returned. I didn't realise this was rare, AFAIK this is why my Dad needed both eyes 'Re-doing'. As my Dad is the only KC I know I had assumed it would return to me also.

This advice is proving useful already

Chris,

The two specialists that have been treating my KC have specialised in this area for over 30 years and between them they can still count on one hand the number of instances KC has returned to a grafted eye either the old cornea or the donor material. So 5 or less cases in a carear total of 60 years between them.

Screening is far mor adavnced now so donor material with KC is less likely than ever before to make it to a patient.

With corneal topography which had not been invented when your father or I had grafts first time round now help the surgeon to detremine how much cornea needs transplanting so the risk of KC returning to the patients cornea left is again much reduced.

Combine this with a DALK graft as John mentions then rejection risks are far greater reduced still further.

A full penetrating graft which I had is mainly used now where there is deep scaring of the cornea affecting the deepest layers of the cornea.

You are right to have concenrns and questions, but what I discoverd when I joined this site 2 years ago is that there have been huge advances in the treatment of KC in the nearly 20 years since I had my grafts.

The only thing KC has stopped me doing is compeeting at a competitive level in motor racing, but as soon as I soft lens is made for my level of KC I will race again

Speaking of things your KC stops you doing, I have heard somewhere that the thinning of the cornea makes bungy/parachute jumping more dangerous. Has anyone else heard this?

Hi Chris

Before I had my grafts I had next to no information about KC and just went along with what my doctors advised. I had my first graft when I was 29 and my second when I was 34. I'm now 43. My grafts are amongst the best things that have ever happened to me. To date I have had no problems with either of them and they continue to give me excellent, pain free and hassle free, eyesight 24/7 (with glasses).

If I had known pre graft what I know now I'm sure I would have still gone ahead but it would have made what was already a stressful time even worse. I like to know as much as I can about things but sometimes it can make decision making that much harder can't it?

What impact does KC have on your life at the moment? What can't you do that a graft would hopefully enable you to do again? It's the answers to those sorts of questions that are going to go help you decide.

Good luck making your decision. It can't be easy with what is happening with your father.

Hi Chris and welcome.
As others have said, corneal grafts have developed a lot in the last few years. What's happened to your father is very unusual - we have a number of members who have had successful regrafts 20 or 30 yrs down the line, and others who still have the original graft 30 yrs on. And of course, the other area that has developed a lot is the range of contact lens options. Although you couldn't get on with RGPs, have you talked about different lens options eg scleral lenses? Might be worth a try. Good luck with whatever course you decide on.
Anne

Well thanks for all your advice and info, this is all weighing heavily on me and I need to decide quickly. You have all been really helpful

Chris

Just a few things to add....have you tried the various designs of lenses available?....Sclerals etc?

Grafts should always be the LAST course of action.....and you should alway aim to exchaust the Contact Lens option. Standard RGP's can be pretty useless in medium/advanced cases of KC (but ill caveat that around the individual case!)....but if you have given up on the Lenses, id revisit Sclerals or Intra-Lymbal lenses just one last time........if you can delay the graft, and get adequate vision with a Lens than happy days............

Jay