UK Keratoconus Self-Help and Support Association

hi there everyone, im another new kid

I was first diagnosed with KC when i was at primary school (seems like ages ago) now i'm 25 (thats even more scary).

Was just recently refered to hospital by my optician as he can no longer help me, and was told by the consultant there at least a 6 month waiting list for transplant.

Got a letter yesterday with a date - 27 Nov, only had to wait 8 weeks.

I know that this is the right thing to do...just a wee bit scared.

But just to let u all know, that this is an excellent website, and has proved me with a wealth of information, and brings comfort knowing there are simliar people out there.

Sarah x

Hi Sarah

Just a quick hello and welcome really as I was just checking in here before going to bed.

Being 'a wee bit scared' is miles better than my out and out terrified before my first graft. I had loads of questions that no one could, or would, answer.

Take care and I hope your graft is as successful for you as mine have been for me.

Hi Sarah, and welcome to the forum.

Maybe you've had an excellent optician, and you've progressed through the spectrum of various contact lenses. If so, then I'm glad.

For most of us though, when that time comes when the "regular" optician refers to a consultant, a graft is still several years away. So you can imagine how surprised I was to read your post!

You've obviously had KC for some time, but consultant ophthalmologists (being surgeons) naturally consider surgery. Sure, you may well be a good candidate for surgery, but perhaps you could delay surgery longer using a different type of contact lens?

You see, the progression of KC can stop at any time, and it may be that you could stay off the operating table for ever.

Don't get me wrong, most people with grafts are really happy that they've had them (including me!), but you can always get another contact lens, but you're stuck with a graft.

What sort of correction are you wearing at the moment? How good is it? Do you know why you're going straight down the graft route?

Please keep us posted, whatever route you end up taking.

All the best,

Hi Sarah

Welcome to the forum

All the best on November 27. I went to my first hospital clinic with fear and trembling, but when I got there I found that things were not nearly as scary as I had thought.

Firstly, the ophthalmologist (big word; it means eye surgeon) sent me to see an optometrist who specialized in fitting contact lenses to eyes with keratoconus. the ophthalmologist then continued to see me on a more-or-less six monthly basis for over 20 years until I finally became contact lens intollerant.

I then agreed to have my first surgery.

Let us know how you get on.

Yours aye

Andrew

thank u all for ur kind words

When i was at school it was the school nurse that picked up my vision was right. She referred me to my gp, who in turn to the hospital, who then put me to an optometrist.

Have had soft and rgp lenses which up until a few years were fine. Recently got a scleral. After all the getting up 5hrs early to try and get it in, it made absolutely no improvement to my vision.

Up until the last year or so, i've got on by no problemo, but my vision in my good eye isnt as hot as it used to be, and im starting to struggle so have got a rgp to correct that, and it works a treat. Feel that if my good eye is goin to get worse (really hope it doesnt tho) now has to be the time to get this done. At the end of the day, I cant see a thing out of it (the bad one) so really, I dont have much to loose.

Sarah
x

Hi good luck.


I was scheduled for surgery earlier in the year but decided to put it on hold. I am currently piggybacking daily disposable with rgp on top.

Comfort is very good, although ,my eyes will no longer tolerate rgp on its own for more than a few minutes.


Everyones eyesight is different, but at least with this forum you will get ideas and options.

Hi Sarah,

Well it does indeed sound like you've been very well cared for up to now

It's a shame that sclerals weren't the magic fix that they are for some people. Best of luck for November, do keep in touch and let us know how you get on.

All the best,

Good luck, hope it goes well.

Hi Sarah,

Hope all goes well for you on the 27th November. I am having my right eye grafted on the same day, so we will both be going through it together

All the best

Anne

Sarah and Anne

Are you at the same hospital?

Andrew