UK Keratoconus Self-Help and Support Association

Hi there, this is still Lou the Director of Sci-Fi and Silliness and Cake but I changed ISP and address and ended up having to re-register, so I'm not new!
Anyone here who has emailed me who wants my new email addres please PM me.

Now, serious stuff - I was in clinic today and have been offered a re-graft to my left eye. There is no useful vision in that eye which I had grafted [full thickness] in the early 90's. I did have some episodes of rejection and needed laser treatment to seal off blood vessels growing into the graft. The graft survived but the vision is not useful and the shape of the cornea too irregular for RGP's. Sceleral only acheived a couple of letters on the Snellen but I physically can't handle them [not unless I married Ken].
The right eye has a 24 yr old graft and is my 'good' eye with an RGP, it's opposite ends of the eye chart with and without the lens. I always worry about what if anything happened [failure/lens intolerance] because I'd have no 'back up' in the left eye, so if I have the left eye done and it worked out [another RGP] then I would have that back up. The sight couldn't be made worse if it didn't work out, however rejection episodes or total failure is not something to be taken lightly as a possibility.
There are pro's and con's to staying as I am or having the left eye re-grafted, what would you do? Have any of you had yours re-grafted, if so how did it work out in terms of rejection/resulting sight? The doc said that the risks were no greater than the first time but surfing the web [a mixed blessing I know] sometimes suggests otherwise, that prognosis is not as good with re-grafts.
I just really need to hear some views

Aha! Hence the quesiton I jsut answered elsewhere.
And no, we wouldn't want to be encouraging the group's stalwart supporters into bigamy.....
Don't see why the stitching bit should e more problematically 2nd, 3rd... time round (though my sewing skills are non-existent, so maybe it would be).
It is generally reckoned that 2nd, 3rd... time around your metabolism may be more used to repelling boarders, so rejection attempts might be more likely - even in inducing a rejection of the OTHER eye's graft. However, theya re now familiar with that as an issue, so watch out for it, adjust the drugs, etc.
3rd time around, doing tissue matchinng is more on the cards, and they might put you onto fullscale immuno-suppressants, not just steroid eye drops. The trouble with that is, if you start going down with every bug going round, and that messes up your health in other ways. It's a question (or set of questions) to ask the doctors, I'd guess.
Good luck with whatever you decide. And do keep us posted.
Personally - since you ask : got to put in category of "not applicable"; I'm now so hypersensitised to the drugs that any further eye surgery is impossible - at least for the foreseeale future. In your position, I think I'd be tempted.
I hope you and your doctor know each other and have a good relationship.
Rosemary

We've been missing you, Louise.

How do you feel about a re-graft? With no useful vision you may have nothing to lose.

As I say, we have missed you. I know that this is a difficult decision for you to have to make. While nobody can make it for you, in your position I think I'd have the surgery.

Every good wish.

Andrew

Thanks Rosemary and Andrew, good to 'see' you too
There are these papers, kinda scare me a bit but you can get lost in statistics;
http://www.ncbi.nlm.nih.gov/pubmed/1648 ... rom=pubmed
http://www.biomedcentral.com/1471-2415/5/26

There were about 10 papers I found, they say that grafting for KC have the best outcomes, but re-grafting doesn't appear to yield as good results.
The other eye being affected I didn't know about and I have to say that really scares me. Also, I couldn't cope with needing oral steroids for long periods of time if there were significant rejection because 1] I have osteopeania which may progress to osteoporosis post menopause therefore I need to limit steroids per se [I've reduced my inhaler], 2] I had eating problems in my youth and steroid induced weight gain would trigger that.

In terms of the vision in my left eye, re-grafting could not make it worse, but rejection/failure and the above would make life worse.
I wish I had a crystal ball and could know whether my right eye will survive my entire life, whether it's worth the risks to have a re-graft of the left eye and whether if I did how it would turn out. Don't ask for much do I?!!!

It's such a hard decision [although I said yes and are on the list, I can always say no] probably made harder with maturity and a little more knowledge of what can go wrong. The most awful part of my previous graft was the subconjunctival injection of steroids to control a rejection episode. I had to get a mate to hold my hands down, the needle going in there despite the topical LA is the worst feeling in the world, noone wants to see a needle going in there. Then within 5 minutes a hot burning pain developed which lasted 12 hours [I watched the clock] and the hourly eye drops by comparison to the hot eye felt so cold they hurt when dropped in. That's nightmarish stuff for me, I guess I question whether I could cope if that happened again.

On the other hand, I really fear anything happening to my right eye because all vision is there with a lens, the thought of anything happening to that, needing surgery and being temporarily blind is my worst nightmare.

See what I mean, balancing the physical and emotional risks doesn't show an obvious clear pathway.
It's so different when both your eyes are grafted isn't it, if only one were grafted I wouldn't hesitate to have it done. I'm hesitant because I have more fear this time more knowledge more experience and somehow that makes it harder not easier.

PS, my middle aged glasses as I call them for my right eye in addition to the lens for reading might need reviewing within 1 yr rather than 2
I still keep forgetting to put them on because my little brain says, you have a lens in, you wear lens or glasses not both, brain says no....like computer says no....oh get a grip woman!

http://www.springerlink.com/content/7683m547275055t7/

"patients who undergo corneal transplantation should be maintained under close ophthalmic surveillance" - do you think they mean a web cam or CCTV in your home directly linked to Moorfields?!

... or just a resgular visit to a clinic so that they can watch your progress!

Hi Lou - good to see you back! What a hard decision - a crystal ball would be very handy! On the positive side, although you're much more aware of the risks, you're also much more aware of the danger signs which might signal a rejection. And that rejections caught early are almost invariably reversed. I had my first rejection episode in the eye that was grafted first shortly after a graft was done in the other eye (we're talking 1988 when there was much less awareness of the risks to the other eye). Because I didn't know what to look out for, it was 4 days before I took myself to A&E so also had the dreaded needle in the eye that time (though my experience was nothing like yours - just a bit of pain immediately afterwards which went pretty quickly) plus the hourly drops for 24hrs. The rejection was successfully reversed and for all subsequent rejection episodes (3 or 4 in all) I was at A&E at the first sign of redness in the eye! Still have my original grafts after 20+ years. And we certainly have members of the group who have had successful regrafts 20 or 25 years after the original graft - I don't know if any of them look at the forum and could share their experience. But of course, there are never any cast iron guarantees. Good luck, whatever you decide.
Anne

Loopy-Lou wrote:http://www.springerlink.com/content/7683m547275055t7/

"patients who undergo corneal transplantation should be maintained under close ophthalmic surveillance" - do you think they mean a web cam or CCTV in your home directly linked to Moorfields?!

ROFL!!
That would certainly give pause for thought before each slice of chocolate cake, lest the hospital decide the weight gain couldn't possibly be the steroids after all!!!!
I think they mean more of the idea of, as someone not so long ago said to me, "needing to keep the confidence of the medical team". Huh! I said; what THEM needing to keep MY confidence?
Mind, if there were a webcam in my bedroom, it might make even That Certain Surgeon start to get an idea of why it's unlikley I would be making "inappropriate advances" to a MALE doctor!
Rosemary

Lou, I think you should definitely talk to the hospital people about your concerns about steroids - both during the op, and the ongoing medication regime afterwards.
I have osteoporosis running int he family, had been on various sorts of asthma inhalers for several years (which no longer seemed anything like as effective as they were) and was concerned about steroid weight gain and reduction of resistance to virus infections ofr years in advance. They are all very valid concerns.
You might also like to think - or ask the clinic staff - about having a chat with one of the anaesthetists in advance; I'm sure there are other anti-emetics they can use instead of a hefty i'v dose of steroids, if they know. But I@m sure they coudl tell you about that.
You might also like to think whether - with your horrible memories of the needle in the eye - asking to have any further op under local would be better or worse.
Feel free to mention you know someone (me) who had a very nasty adverse reaction to steroids used in a graft op and has been left with nasty knock-on effects - particularly if they try to tell you it never happens! I'll let you decide whether to mention my name!!!!!!
Rosemary