UK Keratoconus Self-Help and Support Association

Hi folks! - and to all those who've been round long enough to remember me, hail friiends and sorry to be away so long. Life has beeen, to put it mildly, hhectic.
Anyway, I've now given up trying to find my password, got a new one and beeen reactivated, so here I am.

Had what I thought was going to be a routine check-up apopointment at Moorfields last Wednesday (2nnd).
Also was due to have an appointment next week with someone else, to see whether there might be anything elsein addition to the KC causing me to be even more light sensitivve than most people I meet at the conferences, etc.

Didn't quite turn out like that.
Next weeks appointment (and usual long wait in Pharmacy only to wonder "where's the rest .?" - that's another story - was slotted in on same day.

Well, it's a fairly long story I'm cutting short, as got home after 9am appointment at 10 tto 5 and I only live 7 tube stations away.

Upshot: they tell me that mthe condition my eyes are in , it would be quite in order to carry out a transsplant, they are quite happy to do one (well, one at a time) for me, and it's up to me to decide whether I want to go ahead, and let them know.
Also let them know which eye I want done (or done ffirst).

Well, I've known since I was 18 and had my first hyydrops (of 4 so far) that a transplant may be on the cards some day - but I wasn't expecting it last Weddnesday.
Was quite flummoxed!
"out of the blue" you may say, as nothing in particular has taken a marked downturn or come to a crisis point, as it were.

I've read quite a lot of "Graft- do I or don't I?" threads on here, and I know there's lots of you who've had grafts and are getting on fine with them. And knew it was likely to come along some time. Still feels odd to have it finally aarrive, whhooooomph!

This from Stephen Tuft.

Haen't decided anything yet - and am not going to do anything till hay fever season is out of the way, anyway.
I guess I know a lot of the questions and even answers from here (but will gen up again - do we have a Qs tto ask about grafts FAWQ? will o an dlook, anyway.)
Will probably start to build one up, and ask to go back and discuss in more detail - with my mum, who's offered to come and stay and look after me, but will of course want to know what she's letting herself in for.

Basically, it boils down to : if I go ahead and it works out swimmingly, I'll be wondered why I didn't do this 125 years ago. If it goes pear-shaped I'll be regretting deciding to try it ever after. Who knows which it will be?!
Will have to be a full-thickness graft (PK, I IRR?) as I 've had hydropses.
have to chose whether to go for the one with the more distorted vision and better lens comfort/wearing time against the one with better reading visiona nd lfewer double images but not so hot comort.

Meanwhile, here's two questions already on my list for MEH - I suspect they'll say "medical sW dept" for 1 and not have a clue about the other. ANyone here have any ideas?
1. Money. i'm self-employed. Is there anyy form of sick pay or similar I can claim if I'm in hospital having (a) transplant(s0 and can't work for several weeks, or do I have to start saving up for this op?
2. So I've been living with ever ore fuzzy and shorter-range sight for years, and am not used to dealing iwth high-quality visual data, and have become accusotmed to not working by sound (eg. talking computer), touch, memory rather than along a visual paradigm Is there any suppport, advice, traiing, etc to help adjust to (hopefully) much-improved visual information suddenly arriving? - cos if this works, I can see myself being in a situation where I can no longer say to people "Sorry, can't see that" but what I can see won't necessarily make any more sense to me than it ever did. If you see what I mean.

Rosemary

I can answer 1. for you

Claim Incapacity Benefit through your local Job Centre Plus. This is based on NI contributions and it may be worthwhile claiming Income Support at the same time. Also, if you haven't done so already, I would put a claim in for Disability Living Allowance, but be prepared for a long wait on their decision as it took 14 weeks for DLA to decide my claim.

Rosemary good to hear from you again.

I will be at the confrence, we met briefly at the last one and I am happy to talk through grafts with you as I've had two PK grafts. You can also pm me your number and I will give you a call. My story is not the norm regarding KC but is regarding the grafts.

With a PK graft to be honest you are looking at 12 months before the vision comes good so your brain will constantly be adjusting so good vision when it comes will be a shock but not where you would need help adapting. The initial shock for me was going from legally blind to looking at the eye chart the next day and being able to not only see it but the top line too in one sharp image.

The Frequently Asked Questions section has quite a bit on grafts to if you have not been there already.

My preferance reagrding a PK would be to have individual sutures because then as the cornea heals, the astigmatism is a lot easier to control. If you have ever sewn a round patch on something you always get creases at the edges. If memory serves from an old survey the group did, about half those whith grafts end up with glasses, the others contact lenses. I coped well with glasses up until 2004 for my right eye, the left I still get 6/6 and the astigmatism is mild. Both grafts are nearly 20 years old. The right is a different story because KC is in the host tissue distorting the graft. However with the advances in surgery this extremely rare situation is becoming even rarer.

As you will have read in other posts there is rejection which is more likly than my situation, but when caught early can be reversed. Anne Klepatz went through this and once reversed has been fine ever since. John Smith has been less lucky, but the rejection has been reversed and he enjoys good vision with correction.

The idea of any surgery as you know is to make a cornea that is easier to correct the vision.

For me aswell, after initial light sensitivity for a week post op, I was no longer sensative to the light which I put down to having a decent cornea.

Hope this helps.

Gareth

Hi Rosemary, and welcome back.

Just to add to the confusion on PK grafts... mine had a continuous running stitch, and now I'm happily wearing glasses in front of that eye and achieving 6/9 vision.

I thought that the running versus interrupted stitching idea was purely down to consultant choice - sometimes on the day, but usually in advance.

Gareth is correct that differences in stitch tension can be adjusted in interrupted stitches by removal of a single stitch... but then again having a single stitch probably means that the tension is going to be more or less even all the way round anyway.

Hi folks!
Thanks for the replies.
Am intending to be at the Conference in June (assuming am not lying in a field in front of the Olympiv Festruction Agency bulldozers or in Holloway having been arrested for so doing!)
SO would be very glad to talk to people about grafts.
Over a pint, gallon of coffee or whatever.
Actually, be glad to talk to all these familiar names (and less familiar) about lots of things.

Am still really letting the idea simmer at the back of the brain. And surviving hay fever season.
Am sure I can't be the first person at MEH contemplating transplant (or other ops) and asking about "sick pay" eqivalent for the self-employed; sprob med SWs have dealt with it before. If not, will find local DEA and get her to sort out paperwork with me. TWIll try the line of being more employable if can see betterr. Hmmm...

Got on a bike for first time in ages - years, I think! - this evening. Trying to reunite bike with its owner, who'd lcome to work on it on Weds and left it parked there when went out to Do in evening. SI was temping there today, and she wasn't, and she was still on way to collect bike at end of day when everyone else wanted to lock up and go home, so I rode it across the industrial estate and up track towards main road to meet her Interesting contrast of feelings - "I could get back into this!" and "It's OK up here, but i don't want to be rinding on the main road in the traffic when I can't see better than this."
Rosemary

Rosemary

Welcome back. I missed you!

If you decide to go ahead with the graft, all the best. I have always been glad to have had both of mine, although I waited until I was 53 before my first and 57 before my second.

I struggled a bit with the sudden arrival of good sight, but after about a week I was back into the swing of things, although I still sometimes take off my glasses becasue the sharpness of my vision can make me a little dizzy.

All the best

Andrew

Hi Rosemary,

Good to hear from you again
I finally had my right eye grafted in November and it is honestly the best thing i have done (well apart from my children )
I have gone from not being able to see the eye chart to getting 6/12 with glasses my only regret is that i speant so long worrying about it and getting mysef all stressed
Hope you get things sorted out soon

take care
Anne