UK Keratoconus Self-Help and Support Association

Hi Legy
I know that in a previous post you were talking about problems with your grafts, which sounded like rejection episodes (and being amazingly upbeat about it all!) Did those problems get resolved or are they still ongoing? Although your consultant didn't expect any improvement in your unaided vision with the grafts, did he talk about the possibility of wearing contact lenses eventually? I'm not alone here in only getting useful vision with one of my grafts once I could go back to wearing a contact lens in it. And that was almost 2 years after the operation. So I'm wondering whether your current vision really is as good as it's going to get, or whether you might get more vision once you can have some correction. Are you currently registered as blind or partially sighted so that you can get access to any visual aids that might help?
I've only ever been 'legally' blind during periods when I couldn't wear a lens in either eye so I've never had to face a long term problem. But I'm sure there are others here who can say more.
All the very best
Anne

was dx as legally blind in March this year, (about 3 weeks after my transplant)

I found the phone number for the "emotional support" side of the RNIB and had 10 weeks worth of phone councelling from them which was all free and incredible, really helped.

I have also been very fortunate and the local Jewish(Im Jewish) blind social services liason worker put me in contact with a rehabilitation officer who gave me superb long cane training,

I have actually a lot more confidence now to what I had prior, and have found teh whole experience strangely liberating...

if you want to chat feel able to message me any time

Lea xox

Anne Klepacz wrote:Hi Legy
I know that in a previous post you were talking about problems with your grafts, which sounded like rejection episodes (and being amazingly upbeat about it all!) Did those problems get resolved or are they still ongoing? Although your consultant didn't expect any improvement in your unaided vision with the grafts, did he talk about the possibility of wearing contact lenses eventually? I'm not alone here in only getting useful vision with one of my grafts once I could go back to wearing a contact lens in it. And that was almost 2 years after the operation. So I'm wondering whether your current vision really is as good as it's going to get, or whether you might get more vision once you can have some correction. Are you currently registered as blind or partially sighted so that you can get access to any visual aids that might help?
I've only ever been 'legally' blind during periods when I couldn't wear a lens in either eye so I've never had to face a long term problem. But I'm sure there are others here who can say more.
All the very best
Anne

Hi Anne. Thanks for your response. Yes I have had three rejections episodes in no.1 eye over the last 17 months. I have hardly been off steroid drops and will be on a low dose drop long term due to the rejection.

I think it is done differently in other countries but in Australia, where the ocker Legy hails from, my Doc normally does 2 stitches only. 1 is removed 3 months after the graft, the other is removed 9 months later. And he doesn't like you wearing lenses until the stitches are removed.

I have used so much of the high dose steroids that I have developed a cataract ( a potential side effect) but the doc does not want to remove the last stitch or the cataract in eye no.1 because the eye is in such a poor state.

Because I had very severe KC and Pellucid Marginal Degeneration (PMD) I had a full thickness graft over a much larger area than normal. This increases the risk of rejection I have since found out.

Eye no.2 was done 4 months ago. Full thickness again. My poor doc had lots of trouble doing the op. He had to put extra stitches in. So far I have had no rejection and he has been able to remove two stiches. (2 to go)

Vision wise, eye I was blind in eye no.1 before the op. I could only distinguish light and dark. Vision in that eye has improved which is wonderful for me even though it is still very poor.

Eye no.2 is pretty useless at the moment but like you Anne, I think it is only early days and may well improve or like you said, I may be able to wear a lens again in the long term. So I have decided I am not giving up all hope must yet despite the doc's prognosis.

As for getting visual aids etc, I have been unable to access much help because the doc has to say I will not get adequate corrected vision in the long term.

Perhaps this is why I am relieved desite the poorer outlook.

I presume you meant to say that your doc thinks you WILL get better corrected vision in the long term, not that you won't. Though it seems perverse that you can't get visual aids in the meantime to help you (though that's no different in the UK, alas!) And you're right, surgeons here do use more stitches - usually around 16 or some use a running stitch. I'm intrigued that so few are used in Australia. Wishing you all the best with eye 2. Keep positive!
Anne

space_cadet wrote:was dx as legally blind in March this year, (about 3 weeks after my transplant)

I found the phone number for the "emotional support" side of the RNIB and had 10 weeks worth of phone councelling from them which was all free and incredible, really helped.

I have also been very fortunate and the local Jewish(Im Jewish) blind social services liason worker put me in contact with a rehabilitation officer who gave me superb long cane training,

I have actually a lot more confidence now to what I had prior, and have found teh whole experience strangely liberating...

if you want to chat feel able to message me any time

Lea xox

Hi Lea. Sorry I didn't acknowledge your post earlier. My eyes were too sore to continue this morning.

I have been watching your posts and following your struggle. I have felt for you.

Since the Doc has given me the not so good prognosis I have been abe to follow up on getting some help and am booked in to do a white cane course next month.

It was good to read your comments. Makes me feel a bit less odd

Anne Klepacz wrote:I presume you meant to say that your doc thinks you WILL get better corrected vision in the long term, not that you won't. Though it seems perverse that you can't get visual aids in the meantime to help you (though that's no different in the UK, alas!) And you're right, surgeons here do use more stitches - usually around 16 or some use a running stitch. I'm intrigued that so few are used in Australia. Wishing you all the best with eye 2. Keep positive!
Anne

Yes you are right I did mean WILL

And yeah isn't it frustrating when you can't get help because your condition isn't neccassarily permanent.

Regarding the stitches, its wierd the way it is done isn't it? I have no idea if all Aussie opthalmologists do it this way over here or if it is just mine.

if you want to talk on skype at all let me know and I can let you have my username x

Thaks Lea. That would be good. My phone won't be connected until late next week but I would love to ring you then.
My email addy is legendarycountrychick@hotmail.com if you want to send me your username rather than post it here.