UK Keratoconus Self-Help and Support Association

Hello People, I am new to writing on this site but I have been reading your posts for a while now, and thought I'd let you know my experience of Keratoconus.

I was told at the age of 14 that I had Keratoconus and that my right eye was too bad to do anything with apart from have the corneal Transplant, as I was only young I said no as the thought completely petrified me, and my other eye was fine, throughout the years my left eye has deteriorated and I have to have regular visits to the eye department to have my contact lens changed.

Last year my eyes where getting really bad with light sensitivity and the only option I seemed to have was the corneal transplant, so at the age of 22 I finally decided to go on the wainting list.

I had the operation last week on the 14/08/06 and it was fine. I was so scared of how my eye would feel after it, but its great. I had my operation at Arrowe Park Hospital in the Wirral, and the specialist Mr Watts seems to have done a great job. I stayed in over night and when they took the bandage off my eye the next day I could see the first 3 lines of the eye chart (I never used to beable to see where the actual chart was never mind the letters on it) My eye felt strange it was a bit stratchy I think it was probably the stitiches rubbing on my eye lid, but apart from that which was not bad at all it did not hurt. The only thing that happened which was not exected was I had a Hemorrhage during the operation, but that effected my sight at all, the only thing is is that the bottom half of my eye is bloody but that should clear up soon.

I would recommend this operation to anyone who needs it, I am a bit annoyed at myself for not getting this done sooner. My new eye is actually better than the eye I havent had the operation on its amazing.

I am writing this a week after my operation and the most painful thing I have found so far is the tape I have to use to stick my eye sheild to my face, when I take it off it feels like I am waxing parts of my face off.

I thought I'd write this to make people aware that its not a bad operastion at all, and I've been reading this website for a few weeks before my operation and I found what people had written about their experiences really helpful.

If any one wants to know anything else about my experince feel free to ask. Also if any one else has had a hemorage during the operation let me know how you got on.

Welcome Jenny.

Good to hear the graft went well and long may it continue.

Jenny

Thats awesome news!...and to see the 3rd line morning after!..well! thats just excellent!

Can I ask what type of graft it was?..Full thickness or Partial?...

J

To be honest I dont know, when he checked my eye before the operation he said there was a lot of scarring, but he never said. And when I saw the doctor the day after he didnt mention it, and I was still abit woosey. I have an appointment a week on thursday so I'll find out then.

They never really gave me much information before I left the hospital. I wasnt sure wheather to rest my eye or try and use it as much as possibile, and I wasnt sure wheather I should put the contact lens back in the eye that hadnt had the operation. I've just guessed alot really. I am now wearing my contact lens, and trying to use the eye when I can but i've got used to having it shut so I have to keep reminding myself to open it. My brain is abit confused I think by suddenly having vision on that side of my face, when things are close I see double but its fine from far away.

I'll let you know when I find out what graft I had done.

Jenny

You do raise concerns when you say they never told you about the "to do's" and "dont'".....that really does annoy me when I read that.....but am really glad that you have kinda got it together and realised logically what not to do etc.

If you need any info feel free to ask here......but (obv) ultimately only your consultant can give you definitive answers as you are under his care)

J

Hi Jenny, welcome to the forum and to the post-graft club!

I had my (second) graft a few days before you, and because I had the epithelium (the outermost layer of the cornea) removed artifically beforehand, I can't see a lot now, but vision is slowly improving already.

If you can see so well now (well done, by the way) this means that you will still have the donor's epithelium in place. Unfortunately, after a couple of weeks, those cells will die and be replaced by your own. During this process - which can take a few months - your vision will probably get worse. But don't worry, as it will improve again as your own cells take over.

My consultant scraped off the donor epithelium to speed up the process, but it did mean that I had to have my eyelid stitched shut for 4 days

More information is on my blog, which will be extended soon.

jayuk wrote:Jenny

You do raise concerns when you say they never told you about the "to do's" and "dont'".....that really does annoy me when I read that.....but am really glad that you have kinda got it together and realised logically what not to do etc.

If you need any info feel free to ask here......but (obv) ultimately only your consultant can give you definitive answers as you are under his care)

J

Well, sometimes that may be to the better. For Jenny, it seems she has only positive experiences with this. So why bother to worry about what could have failed? I felt the same about this after my last graft. Alternative is blindness, practically.

Hi Jenny and welcome.

I am very pleased to hear everything is proceeding well.

I am sure that those of us who may also need a graft at some stage will find your comments reassuring.

Take care.

There´s allways a risk. But the only graft failiure I have ever heard of is from Moorfields in Londun, where a graft led ti infection and blindness. But then again, I read llttle about this elswhere than here. So I wouldn´t worry..

Just logged in - first time for a while!

Re grafts: Always, always, always, a last resort....did I say always...yes!!

Good ophthalmic surgeons are pragmatic and realistic. They should know that *all* avenues must be explored before grafting - not all do. The corneal specialist ophthalmoloists are the best ones to see as they will advise on the pros and cons of the op. Fwiw here are the stages people with KC ought to consider, in my professional opinion, as far as correction is concerned.

1) Specs (rarely!)
2) RGP lenses
3) Hard (PMMA) lenses (rare these days since Rose K, K2 and other good designs))
4) Scleral Lenses (BIG thanks to Ken Pullum)
5) Graft (partial or full thickness)

Sucessful KC contact lens wearers have a higher degree of satisfaction (generally) than graft patients. (before you "grafters" out there tell me that's rubbish, I know there are exceptions and the exceptions are the people who post positively about grafts, but reading all the acadamic papers on the subject it;'s just not the case - contacts are best!.) Graft techniques are really improving though and albeit still a last resort the success rate for Grafts in FC are really excellent - in fact the best of all.

Hope all that helps - more anon!
Best

David