just been to my hospital appointment :-(

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Anne B
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Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Hertfordshire

Postby Anne B » Thu 19 Oct 2006 8:28 pm

I would, see if you can arange another appointment, you shouldn't be left feeling like you do.

Good luck
Anne
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Barney
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Postby Barney » Fri 20 Oct 2006 1:57 pm

Sounds like everyone here has given you good advice.

Would also say though that I wouldn't want you to get it into your head that surgery would be too terrible to face. On forums like this there'll be people who have been really unlucky. There are also people like me who had a graft years ago and it was brilliant. Best decision I ever made with no problems at all and I hope it lasts.

If your eyesight eventually means something else needs to be done there might be other alternatives around by then. With luck you'll get a consultant you have confidence in to guide you.

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Sweet
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Postby Sweet » Fri 20 Oct 2006 9:14 pm

When i was diagnosed at 14 my consultant then told me that i would need surgery but i was adamant that i wasn't going to have it at 16 which they wanted to do. Years went by and i finally gave in at 29 after spending all my life relying on vision in one eye only. It was only when my good eye went through a really bad patch and i had seven months off work almost blind that i gave in!

I think that you can have a graft at any age if you want one and are prepared. I do feel though that you need ALL the information, good and bad to make an informed choice. I didn't feel that a graft was right for me until i couldn't see anything, and only then it was only being MY choice that i went ahead.

I hope that you do go back and get another appointment. You need to have all the support and be able to try everything before you think about getting a graft. It can take a very long time to find the best lenses for you, but don't give up hope. New things are coming out everyday!

Just don't leave it too late as i almost did where it was only in losing my vision in one eye that it hit me that i had to get some help.

Am thinking of you, best of luck!

Sweet X x X
Sweet X x X

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Postby Andrew MacLean » Sat 21 Oct 2006 4:54 pm

Jayboi

good to see you again, but I'm sorry your most recent hospital visit was such a disaster.

can I ask, was it a contact lens appointment or an ophthalmology appointment. (You may have answerd this above, and I may have missed it).

What I do is this: I make a note of everything I want to know, and I make sure that I go on asking until I understand the answers! It may be that an appointment with the consultant would give you another stab at getting the information you need, but even consultant's appointments do not come with any guarantees.

Part of this is down to the patient. I am never shy about telling my consultant, or anybody else, if I do not think I have understood what I have been told. If I do not share my confusion, they might well imagine that I have understood perfectly everything that they have said, and go home to tell their children that they are superb communicators, enabling an old man to understand in a few words secret and arcane truths that it took them years to unlock.

The business of being told to come back if there is ever any redness or pain is actually good advice. sometimes people who wear contact lenses are prone to eye infections. These can cause pain, and ofter a reddening of the sclera. It is important to have these symptoms seen as quickly as possible. IT DOES NOT MEAN THAT YOU ARE SHOWING SIGNS OF INFECTION. I think that I get advice like this every time I go and I did once ask if this meant that they had spotted something that ought to make me worried.

"Not at all" was the answer, "Just good advice, in case anything develops."

Actually it did, more than once, and I got myself along to the clinic, had courses of chloramphenicol prescribed and my infection(s) cleared up in no time.

All be best, my friend. Let us know how you get on.

Andrew
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