UK Keratoconus Self-Help and Support Association

Hi everyone,
this is the first time i have posted a topic on this board,so bare with me!!,i am 45 years old and have had KC since i was 29, after many months/years of treatment and wearing hard contact lenses, about six weeks ago i developed hidrops which is still the case, i can only wear one contact lens, the specialist has now advised me that i will need a graft due to the scarring on the eye i am really worried about this, can someone put my mind at ease, i have heard horror stories from loads of people, non of which have had it, what is the timescale? ie how long will i be off work is the pain that bad? how long will the operation take?
your comments will really help, i feel very low and worried at the moment

Russ
Sorry - can't help you with your concerns about the graft - but others will I know - you have come to the right place. Everyone through this forum has been really helpful and comforting to many of us especially when we've felt low for whatever reason. Hang on in there!

Pat

Welcome Russ,

Unfortunately I can't help either but you will certainly get some helpful advice very shortly.

All the best

Russ

Im glad you posted and I hope this place can help you! (in fact I know it will!)

Whilst a Graft can be a very daunting thought, majority of people kinda wake up thinking "is that it!"....

With regards to when you need one...well I think this question is very broad and needs buy in from both you and your consultant (or whoever has advised you to have one)
a) Can you see right now, either with lenses or without
b) what will be the impact to your life during the recovery period of a graft (anything from 6-18 months)

The actual pain is not that bad...or nothing that a few decent painkillers cant handle. You wll more than likely experience a few days of "scratchy" feeling whilst your eye lid caters for the sutures and then simple slides over them as you blink

Operation Time :
DALK graft : 90-180 mintutes
Full Penetrating Graft : 40-120 minutes

In terms of how long you will be off work...anything from 5 - 30 days...it all depends on whether you can function and are comfortable to go back...

Dont listen to the scaremongers...who havent any real experience of going through the procedure......at the end of the day..the Go-No Go decision on having the graft is down to you...ask yourself... "How can you function in your present state" and "Are there any other solutions I can explore - Lenses etc"

Ask as many questions are you need to, dont think any question is silly. The decision to have it is NOT reversible....and ones its done...its done.....and the recovery period begins....along with potentially challenging issues that Grafts CAN bring.....

HTH

J

Russ,

Hello and welcome to the forum! I do hope that you get as much help and support here as you need.

I had a DALK graft in August 2005. The stitches have now all been removed and i am awaiting a contact lens fitting.

Please don't listen to all the bad stories about pain as it really isn't that bad. I was on paracetamol for a few days and that was it!

You need to be careful post graft with lifting heavy objects and washing your face. You get a protective eye shield to wear to bed but you honestly do get used to everything quickly.

Hoping that if you decide to go for a graft it is soon and everything goes well with you! Do drop in and let us know how you get on and you are more than welcme to contact me be PM if you wish, love Sweet X x X

Hi Russ,

Youve came to the right place - i started posting here about a month before my graft, and i am extremely grateful for the advice and support of everyone out there (awww )

I had my first visit to the consultant in septmeber, after my optician refered me back to the hospital. By October I had a date for the end of november. I had a full graft 8 weeks ago. My main concerns wasnt the graft its self, but the aftermath.

Not sure how long the operation took - to be honest that was the least of my concerns. If i remember rightly op was supposed to take place at 2, and i can definately remember lookin at the clock when got back to ward and it was 5.30.

I can put my hand on my heart and say i suffered no pain initally, just discomfort and dizziness, which wasnt going away, turned out i had a leak - which is supposedly rare. The drs gave it nearly a week to heal using a bandage lens but it didnt so i had to get another stitch put in, and from that day on, on the whole everythings been fine.

I was off work for 4 weeks, if i didnt have the leak, would probably have been back sooner.

I ve had a few streaks of bad luck - the leak, also developed a lovely ulcer on the graft - which was painless, treated promptly and now gone. Last week had a loose stitch removed, and 1 of my stitches now acts as a magnet to mucus, looks like i have a boogey in my eye Im going away on holiday next week - which i have been assured will be fine

Have no improvment in my vision yet, know it takes time, I am hopeful, but at the end of the day i couldnt see anything before i had it done, so really nothing to loose.

Hope that didnt bore you too much, and helps put u at ease a little.
Sarah.

Hi Russ. Welcome to the forum.

I am sorry to hear about your Hydrops. I hope it clears up soon.

I have now had two cornea grafts, as indeed have a great many others who post here. The first was PK and the second DALK. Neither was particularly painful and neither involved me being off work for too long.

I think I was off for about six weeks following the first graft, but hardly at all following he second.

Serioysly, Russ, things are seldom as bad as people think. Try not to listen to the well intentioned gloom of people who do not know.

All the best

Andrew

Welcome Russ! I too have had grafts in both eyes which have given me back good vision with either contact lenses or glasses (wonderful to have the choice!) If you PM me or e-mail me on anne@keratoconus-group.org.uk with your postal address, we have various booklets and a DVD of the last conference that I can send you which will give you much more information including stories from other members who've been down the graft path (that goes for any other newbies here who aren't on our mailing list). And you'll find lots of posts on the forum from people with 'graft diaries'.
Anne

I had a graft just before Christmas, and already my vision is slightly better than since the hydrops occured. Not saying this happens in every case, just my own experience.
Like others, my eye was very gritty for a day or two after. To be honest it took longer to recover from having the anaesthetic than the actual graft!
I get bursts of discomfort every so often but these only last a few minutes.
I've not had to take painkillers since the op, except for when I had a sore throat from having a tube in my throat during the op.