UK Keratoconus Self-Help and Support Association

Starting to realise now the full impact of what's, happened. Utterly fed up with eye drops, and hospitals. The worst part is not knowing when the Dr's will allow him to return to work. 96 pound a, week plus universal tax credits isn't cutting it re the mortgage and bills. Plus if he doesn't get back to work in 6 months his, boss has said he'd have to let him go. I've thankgod managed to get a, job at asda but anything I earn comes of the tax credits, so we'll be no better of but at least I won't have to job seek and present at the job centre. To be honest I'm sick to death of his, blooming eye and wish he'd never had the transplant. I feel he should have just accepted he'd wrecked his, eye and cracked on with one. Now he's, saying hed go back to work unable to see out of it.... My point being if you could work with a, duff eye then why the hell put yourself through the transplant insisting you needed to see out of it.

We need more info out of the consultant but it's like getting blood out of a, stone. When can he get back to his, job as a roofer, when do they start shoveing lens in the eye... That's if they can. It'll be a nightmare if he's to have the lens, transplant too.

He didn't think any of this, through at all but to be honest we weren't given much time or info.

Sorry for moan.

..

surely it would be better to have vision in the eye and have two working eyes than be blind in one eye? you need to be patient with a grafted eye and let it settle. The medication is designed to stop it rejected. Grafts can take 18 months to heal

also if he does require a contact lens in the len this will surely massively improve his vision? there will be lots of contact lens options

some of us have no choice to wear hard contact lens every day

Please don't apologise for the moan - you've both been through so much, you need to vent! And dealing with this amount of uncertainty is hard, but I'm afraid it does take time for grafts to settle so I'm not surprised the doctors can't yet tell you when your husband might be able to go back to work. Did he have another appointment today and did you learn any more?
If you're not already getting advice on the financial side, do contact the RNIB and ask to speak to a benefits advisor. I'm not sure there's anything else you're entitled to just now, but they might have some thoughts on dealing with bills in this crisis situation.
And don't beat yourselves up about whether it was the right decision to go ahead - it's one of those choices where almost everyone would go for the best chance of improvement. Hopefully you'll be able to look back at this time and think it was worth all the aggro.

Thanks
Saw a different consultant on Thursday a lot more informative. He was from Canada and his whole attitude was amazeing towards us.

Eye healing well. Gas in eye going slowly and retina looking hood. Was allowed to drop some if the drops do down from 14 a day to 6 which is going to make a big difference.

He saud they may be able to start fitting a contact lens in as little as 2 months but a transplant lens would be at least 6.fealing more positive.

I got myself a job just waiting for a, start date so that will help.

That's good and you are only 3 weeks after the operation. It is inevitably a "wait and see" process. When are due due to go back again?

sounds a really positive appointment x

Sounds a great step forward! Keep us posted

Spoke too soon
Went back today and there's an issue with the cornea they mentioned the cold sore virus and somewhere on cornea not healing.... Anyway altered all his, drops plus had to endure a, painful botox injection into eyelid to drop the eye closed. Return in a week.

sorryto hear of this set back but at least they have caught it. sendign love x