UK Keratoconus Self-Help and Support Association

Ok, i am about. Have borrowed a pc from John but am having a lot of internet trouble with wireless and am having to write this in word to paste and post on the forum. Complicated but i am here.

More worryng than the internet though is the fact that i am off sick again. Far from happy. Woke up Friday morning in so much pain and being photophobic with my supposedly good eye so went along to see my surgeon as i had an appointment to see him to check on the stitches in my other eye. Only good news of the day is that the stitches are fine, although me shouting at him that he was NOT going to remove any caused the lady i saw last time to come running in telling him that i was adamant then to leave them well alone! Well someone is listening to me here as that is what he did. Ok ... one good thing to me!

Bad news is that i have a mild rejection episode in my grafted eye which to me seems blxxdy impossible on the odds with a DALK but there you go, my luck was never with me in any of this. Mild and rejection to me are two words that do not belong together but while he doesn't seem worried i dam well am. He also looked at my other eye for me and diagnosed a herpes simplex infection or iritis which i had kinda guessed already since i had it six months ago but either way treatment is about the same. Now though i've been reading up on both and neither look good to me. Both can cause scarring and blindness and i am always going to be at risk of this so now i'm very sure to not have a good eye at all. I had to laugh at him asking if i was stressed as that can be a cause, with me thinking i've been struggling to move, desperate to get near water and still sinking with life in general. Some things never change. The only way out of this is to be 30 this summer

Anyway ... just to say i am about. My flat is nice and my flatmates are lovely, but in all of this with being off sick again, all i have learnt is that i struggled to be here near some water but i'm back in the same place. I can't see again, i'm off sick unpaid once more, i've completely sunk yet again and this is nowhere near a fresh start. Maybe someone should have told me ... that being near to water is never going to be enough. It doesn't change a thing.

Stay special, and please have more good luck than i do ... sweet

Claire

I am so sorry to learn that things are not going well for you. I know what it's like when you move; you hope that you can put all the bad things behind you. then you move and you find that some of the bad things have moved along with you.

I am salso sorry to know that you are on unpaid sick leave.

The infection in your eye (eyelid?) sounds painful. How are they treating it?

Like you I had always imagined that a rejection was nearly impossible with a DALK. You put up with the slower recovery and trade this against the far lower risk of rejection and then you get hit with the double whammy.

In all this you know that you are in our thoughts.

Am I right that HSV is one of the retro-viruses? Is there any way in which they can inhibit a future occurrence?

All the best

Andrew

Hi Claire,

Hope you recover soon and will be able to make the AGM.

I just thought you were away from the board while you opened up another Pink Shop

Yup, went to town to get a hair cut on Saturday, and what did I see;

THE PINK SHOP

Sweet has arrived in Rugby I thought

Did not have my lenses in so would not of seen you anyway.

While you are off, take the chance to continue the PINK REVOLUTION

Sweet, you know that we're all right behind you giving you all the support you need.

I know that the "rejection" word is a very scary one. I remember being in the same position with my first rejection, but my consultant told me that it was minor and prescribed Maxidex to blast it into submission.

I was still petrified, but within 3 days the rejection had stopped and it was time to slowly wean me back to a regular dose of FML. The consultant was right.

I am far less stressed about rejection now that I've had it 8 times. So I can tell you not to panic and take the meds that you were prescribed and all will be well. That is after all why we go to the aftercare appointments.

I'm sure you'll be fit as a fiddle and full of beans again soon.

We're all thinking of you,

John

Claire

That is sure a bummer!! What has been prescribed for the mild rejection? Do you know what level it is occuring at?...as this is one of the first I think I have heard for DALK rejections!....

J

Well you know there is always a first, just wish it wasn't me. Our surgeon seemed surprised and my optometrist back home hadn't heard of it either and being the only one i trust i guess i'll take his word for it. I guess at least i'm not alone in thinking this is dam odd.

It is on the very surface of the cornea which is why he is classing this as mild but i am still on the same eyedrops, FML qds (four times a day). This to me doesn't really seem good because if these drops haven't worked so far and it is rejecting what faith do i have in them stopping it now? But hey, what does a nurse know when our surgeon is telling me it is all fine and that he is more concerned with the other eye.

Have recently found out that the herpes virus can sometimes look like a rejection episode under a slit lamp and as he didn't have any rose stain to check i'm not sure. But he did think that there was a dendritic ulcer on my ungrafted eye which is related to the herpes virus, strange what you pick up online when they don't want to tell you isn't it? Maybe i have this virus in both eyes who knows? Just waiting a follow up on Friday. Am only on aciclovir eye cream in one eye but on the tablets as well so hoping that will do the trick. Just know that i can never cure this and that there will always be a risk of it coming back especially as the odds are apparently higher if it represents two years since the first outbreak which being six months ago it has. Moorfields were honest with me last time and treated it as being iritis although they didn't really know what it was so maybe this was just something waiting to happen. Being stressed is never a good time as a virus has a nasty way of catching up with you!

Oh well, what we all go through to be able to see. Thanks for the concerns.

sweet

yes, wih my first rejection, the consultant thought it was herpes as a surface rejection can look very similar to herpes.

Either way, Sweet, you've got it covered.

Chat soon,

John

Hmm well i will take the right eye as being the herpes virus then as it hasn't been grafted!

Claire

If its Epithelial rejection than I can understand why the consultant may have been somewhat less concerned....as in majority of cases this does heal with a short and sharp burst of Maxidex.

I often refer to this URL and am posting this to you in the hope that it may help you in some way.

http://www.emedicine.com/oph/topic90.htm

J

Sometimes it is a good thing to be unique. sometimes you may wish you were more run-of-the-mill I guess this is one of the second sorts of time.

I hope they manage to get things straightened out for you, Claire.

Anyway, and entirely selfishly, I'm glad you've got a PC and are abck in touch with us all.

Andrew