UK Keratoconus Self-Help and Support Association

...and couldn't be happier!

It was actually a huge relief when they told me they were going to put me on the waiting list at the Royal Eye Hospital, Manchester.
My left eye has deteriorated rapidly over the last few months..
I couldn't wear any sort of lens in the eye for more than an hour without it being painful/causing redness etc.
I was told I had quite bad scarring on my cornea and that lenses would no longer resolve the problem, meaning a graft was the only real option.
I was on the verge of requesting 1 anyway, so I was truly happy about it!

I have read over the transplant pro's and con's many times - and I had decided that I would be happy to have it done a long time ago!

Is there usually a long waiting period before the operation?

Also, slightly different topic, but the RGP I am using in my right eye has started to cause a fair amount of redness.
The fit & vision are both great, and it causes no pain or soreness - it has just started making my eye red for some reason.

I use drops regularly (Clinitas Soothe) and keep as hydrated as possible. I drink a lot of water, both at work and at home.
I also get a decent amount of sleep and use drops before I go to bed & first thing in the morning.

I was hoping to try a different type of lens, as I thought this may help.
I mentioned the Kerasoft & Hybrid lenses at the hospital, but this idea was just overlooked and I was told it would make no difference.
Is this really the case? As I have read a lot of topics which tell a different story!
Surely a lens with a softer edge would cause less irritation?

I'm sick of people mentioning the fact my eye looks red when I'm out and about.
I would rather sacrifice my vision slightly and wear a lens that wasn't going to irritate my eye as much!
My vision is very good with the RGP, but the fact it causes so much redness just does my head in

Any help/advice would be much appreciated

Lewis,

How long to do you wear your right lens for? As you could be overwearing it.

Reading through your posts you have said that you could wear lenses for 20 hours with no problem. I assume that you aren't doing this everyday but this could be a cause of the problem.

I wear my lenses typically 15 hours a day and can push it to 17 hours occasionally - but my eyes do suffer and not feel right a few days later. So if I know I'm going to have a late night I put my lenses in later in the day.

It might be worth looking at whether your eyes are redder when you've worn your lenses for longer than usual. You could try avoiding the 20 hours wear time - or least giving your eyes a break in the middle of the day.

Lia

Despite being pro-graft (approaching 25 years of success), I always throw in the caution of make sure everything else has been explored.

I know many people that were told graft was the only option and these people ignored the advice and managed to try the soft lenses for KC, this includes people who were told the scaring was too bad to make lenses useful or their KC was too advanced.

The people with corneal scarring have found that since they stopped using RGP lenses and changed to the soft lenses, the level of scarring is much reduced and there is no longer any need for a graft. Those who were told their KC was too advanced have also found that the soft lenses give excellent levels of vision and so postponed the need for a graft. The cornea infact became less steep because the RGP lenses they had been fitted with had drawn the KC cone out more!

With the pressures the NHS is experiencing, I am sure those treating us are more afraid than before to challenge policy. Plus as I have discovered by attended some optomotrists courses so they get used to fitting lenses to a KC patient post graft, their training can often be stuck in the dark ages and it is us KC patients that are more informed in many cases!

Grafts may be easy to do compared to 25 years ago, but as far as I am aware about half of those that have a graft still need to wear a contact lens

I'm 100% with Gareth on this. Every good wish for your graft when it comes.

HI Guys,

It also my understanding different PCTs use different procedures for the graft dependent on the equipment
they have and the expertise of the in house specialist. Thus it would make more sense to stick with
bigger Eye Hospitals? Can anyone elaborate?

Thanks

I guess the question is, would you be gutted to have gone through a corneal graft, and then be asked to wear RGP lenses again?