UK Keratoconus Self-Help and Support Association

Ok, this has taken me a long, long time, well roughly eleven years since i was told that i couldn't wear a lelt lens anymore and would need a graft. I backed out of a graft about five years ago as i just didn't feel ready and to be honest was terrified! But ..... now i don't have a choice as this doesn't get any better does it?

I have seen enough doctors and optometrists over the last five months to last me a lifetime i'm sure, but sadly things have changed during this time as i still can't see well enough with my right eye, (and it is now suffering with iritis) so while i am NOT going to give up on it, as that wouldn't be very fair after thirteen years of good sight would it?!! i'm just changing this slightly and thinking maybe it just needs some time out here and i should make my left eye the better one for a while?

I mean i DO have two eyes right?! LOL! Though to be honest it's only since i pleaded with my new optometrist to please try a left lens as i'm tired of people giving up on it, (while in the meantime i lost three lines of vision with my 'good' eye due to ulcers and a bad infection), that i finally had someone listen to me and try one and i realised it is still there! LOL well not enough to get me to actually read anything on a chart but enough to have slightly more balanced vision anyway!

So ..... i guess i should be getting in touch with him and telling him thanks for his time and patience and this left lens, but i've changed my mind now and am going for a graft after all. I know, i NEVER wanted one and i've come here enough and dam well complained! But things DO change, even my opinion, and i'm being optimistic here that this may well be the best thing i ever do to be able to see well again. And hopefully my right eye will say thank gawd for that! Now i can relax and let the left do some work for a change!!

I've been told by someone here that i will make things change when i'm backed in a corner, and while this doesn't relate to what we were talking about as i'm NOT giving in there, i have found something now that i might be able to fix and i think this will give me something to work on.

So ..... i've signed the consent form, paid a lot of money (but hey who's counting, i gave up on finances after five months of sick pay), and am about to let work know. I AM worried, for stupid reasons and nothing relating to what normal people would be worrying about, such as rejection, infection and failure, but for a stupid thought that i might wake up during it! Yes, it's crazy being a nurse, but maybe there is truth in too much information being not a good thing!

So am having a partial graft (DALK), and i'm really hoping that i may get away with this as i know rejection is far less for a start. I think this is a good idea, and am glad i didn't go through with the last one now on the NHS as it was for a full graft and i'm hoping i don't actually need one. I have been reading here with others going through the same thing, and that helps. Jayuk i need to say thanks for your advice and support, and i know you are aware who i am going to be seen by, so thanks a lot for that

So will let you know how it goes! I do have a date for this as someone cancelled, but sorry, am not going to push fate here and tell you!!

Sweet X x X

Sweet

I know this cant have been easy; and I trust you have made this decision on your own; as you said!

It will be extremely interesting to hear your journey through the DALK and I really hope all goes well!!..you will be in good hands...as I am sure you have done your research.

But one thing I can virtually guarantee..is that when you wake up after the graft..youll be thinking "was that it!" as thats exactly what I did!

Clearly there are many on this board who have had grafts long time before me and can give you excellent advice and what to expect (as in all honesty I am a bit of a graft newbie!)......and there is always my thread of the experience!.

I hope it goes well and I hope the material comes readily available!

Good luck!; although I am certain you dont need it!

J

Hi Sweet,

I just wanted to wish you all the best for your graft, here's hoping it sorts out your troubles.

Don't forget to let us know how you get on.

Thinking of you.

Lesley.x

Good luck Sweet,

I hope your grafts goes as well as mine which are still performing well.

STOP worrying about infections and rejections, although they do happen and you need to know what to look out for THEY ARE RARE.

Regards

Gareth

Sweet,
Good Luck with the graft mate! Hope it all goes well and we'll all be rooting for ya throughout the process! Do let us know how you get on!

Regards

Thanks for all of your replies and pms of support.

Am getting really worried now though which is quite silly really. Just had the pre admission sister phone and go through everything, and she's asking if i have any worries or concerns, and i'm like of course not! I am a nurse and i know how all of this runs, so i'm not saying anything to dispute where she thinks i am, but then after putting the phone down i'm like well actually maybe i am slightly worried here.

Ok, well maybe more truthful and to the point i'm getting really dam nervous about the whole thing and having almost gone through one and pulled out terrified i am determined to see this one through. But that doesn't help really does it when you know it's coming and you can't change how you feel about the whole thing!

And her enquiring about a MRSA screen is far from where i am as it didn't really cross my mind after my GP couldn't do it. I mean just treat me as if i have got it, which in theory i probably do, being in contact with patients everyday, so i'm not worried about that at all. It really is the least of my worries right now! But she was very nice and went through everything that is going to happen, which was helpful.

I DO want this surgery done, i honestly believe i will get better vision in time, it's just i don't want to go through all of this to get there! Ha, a case of wanting everything right now including the cake and eating it!, but it is dam difficult when i haven't had surgery or a GA before to be on the other side of this. I take enough patients to theatre and see all their worries, and now i'm in the same place, which is worse as i KNOW nothing bad is going to happen here so now i'm trying to tell myself so stop being dam silly and start thinking positively! Arrgghh maybe i need my own nurse lmao!

Ok ..... well i've come here and worried enough now, needing to go and remind myself WHY i am doing this! I don't want to give the date but a few here know that it is next week anyway so this is my last weekend to really make sure that i am doing this for the right reasons and that it IS what i want. Life is dam stressful at times really isn't it!! Thanks for listening, and it helps that others worry just as much as i do!

Thanks again, Claire X xX

Claire.. You know when it is the right time to do this... and this is it... You will recover so much better if you go into it in the right frame of mind. Like I need to tell a nurse that. I am so thinking of you. You are strong and will be just fine. Love Jacqueline..

Hi Claire
I havent posted for a while for personal reasons.I wish you all the very best.In my experience,most patients who have had a graft are pleased that they have and often wish they had done it earlier!I am sure you know the risk of complications is very low and the chances are you'll be OK. There is often some interface haze after DALK,so don't be disappointed if vision is rather poor to begin with,it should improve with time.Keep us informed of your progress.Just be a good girl and make sure you take the drops religiously and follow the advice given on dos and donts as nurses probably dont make the best patients!

Good luck and keep us informed.

Hello Claire,

Best Wishes for your op.......thinking of you.

Love,

Susan