Things I feel I ought to know but don't

[GarethB]

Human nature is that we remember the bad so we can avoid it next time, goes back to when we were hunted on!

Only one occasion I was not given the answer to the question I asked because it was not necessary for me to know.

I asked him to justify why considering it was my eyes we wera talking about it was not necessary.

Soon got an answer.

[Alison Fisher]

Nice one Gareth.

[Lynn White]

Alison..

One answer to your questions is that most people who are active on these boards tend to have had a few more problems than others who may just pass by on the sidelines.

Many KC patients do not actually progress to needing contact lenses, never mind grafts. In fact many of those do not actually ever get diagnosed! KC is a quirky condition which we do not yet fully understand , let alone predict how it will progress. That is why research is ongoing - however, research is difficult when the condition is relatively rare.

Many people have grafts which are stable over a long period of time and most of those get on with their lives as you have basically - because there is no "need" to do otherwise.

Hope this helps!

Lynn

[Alison Fisher]

Thanks Lynn

Yes it does help me with getting things in perspective. What you say makes a lot of sense.

My Mum never needed lenses and was only diagnosed because we saw the same optician who after first spotting something not quite right with me paid close attention to her and my brother (who doesn't have KC).

[GarethB]

Valid point Lynn.

We are seeing more people on here with early KC as a result of going for laser surgery for what they think will help with short seightedness.

Compared to 18 months ago, the balance of experience appears to be shifting to more of what Lynne describes.

In 2004 almost all here were the extreme cases and I am sure some of the KC discussions would certainly make you feel all was doom and gloom.

Actually that could not be further from the truth.

Oh Alison, earlier you thought yuor key board would head for melt down, the forum nearly had a melt down with last nights shinanigans in the chit chat area. Now that was manic

[rosemary johnson]

I've met someone who has a graft that's 40 years old (at the time; it will be nearer 42 now).
SHe had a graft int he other eye that was only a few years younger.
Or so we were told...... she didn't look old enough to have had a graft 40 years ago!

It seems to me there are many people who start off being very keen on grafts to spare them from contact lenses, and are then shocked to hear that many people still have to ear contacts post-graft.

As for medics who don't answer questions because "you don't need to know" - well, we don't *have* to sign "informed consent" forms before having an op! - and if we amend the informed consent form to say we are not informed and not giving informed consent because the medic refused to answer our questions and only told us "you don't need to know" - well, that would make an interesting diversion!! - whether int he hosptial ethics committee or in the local paper!

Rosemary

[GarethB]

Rosemary,

That was the point I was trying to get across to the lady at the AGM who felt her sone had wasted much of his education trying and failing with lenses.

The people I spoke to later, I mentioned what you have just posted. Thats what prompted me to do by long post on Sunday about when is the right time to graft.

Rosemary; are you still on lenses or have you had a graft?

Perfectly understand if you'd rather not answer.

Gareth

[Alison Fisher]

Count me as one of the people who was shocked to find out that people still wore contacts post graft. I'm 99.9% sure I was never told of the possibility. I just assumed that I'd have glasses and that would be that, and luckily that's how it turned out.

Rosemary you would despair with me as I signed the form knowing that I didn't really know what could go wrong. I really cringe about that now and I know there's no real excuse. After not being given much info in out-patients I ended up expecting it to be explained to me when I signed the form, but the doctor's english wasn't the best and I ended up being none the wiser. By that point I'd been admitted ready for the op and I didn't feel able to 'make a fuss'. Yeah, I know I'm hopeless, and perhaps stupid, but also in a place where the only choices were to not have the op and carry on not being able to see or to go for it. In those circumstances what choice did I realistically have? Plus I was feeling very vulnerable - I'd been shown to a bed part way down the side of one of those old fashioned long wards with lots of beds either side by a nurse who said she was 'my' nurse but I couldn't see her well enough to be able to recognise her again (I've no idea if she ever did come near me again). I had no idea where the bathroom was or anything, and there was no buzzer to call my nurse. To be honest it was downright scary and it's little wonder I found the whole thing so overwhelming. I was on the same ward for the second graft, but of course I could see far better then and unlike the first time they allowed my husband to stay with me until I went in and he was there when I came out.

I can see I'm going to have to take the plunge and venture into chit chat. I wonder if my keyboard and fingers will be able to keep up?

[Alison Fisher]

That was the point I was trying to get across to the lady at the AGM who felt her sone had wasted much of his education trying and failing with lenses.

That sums up why I am so concerned for my daughters, particularly my eldest. She's at sixth form college and has definite plans for uni and beyond. If, and I know that's a mega huge if, the same thing happens to her as happened to me it would have a huge impact on her plans. It was okay for me, I was never particularly career minded and we have our own business now so no matter what happens I know my employment/career isn't that much of an issue, but for her and what she wants to do it would be.

From my own parents' reaction to me having KC and talking to other parents whose children have health problems of some kind parents really struggle to cope with these things don't they?

[GarethB]

Alison

I am afraid I would disagree with KC affecting your daughters plans.

My A levels were completed while I was registerd partially sighted and I passed fine. Had larger papers, longer to do my examps and a teacher to read the questions I could not and the option of someone writting the answers on my behalf.

Just before strating Uni had my first graft during the summer hols. The first year of my microbiology degree I was still partially sighted, by the ned I had a reasonable corrected sight with glasses. Summer vacation prior to starting second year had the ather eye grafted. Second year went fine and did the practicals from the frist year. Third year was a year in industry working at government research labs, work only just declassified! Final year done with good sight corrected with glasses and got an upper second with honours and KC until recently had no impact on work. Recently had an impact but thanks to adjustments my employer has helped me make, youd barely notice.

Students have far more help available than I had back in the late eighties/early nineties.

What would your daughter like to do?