success stories please!

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emma29
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success stories please!

Postby emma29 » Thu 29 Mar 2007 11:53 am

i don't have KC but i do have salzmanns disease on my left eye. i am blind in my right eye, i have been since i was 4 due to rejected cornea graft on that eye. in the the last 2 years i have developed salzmanns on my left eye, its like a white scar that is covering the pupil, it is supposed to take 20-30 years to get bad but it happened to me in a year and a half! i only have less then a quarter of my sight left and i am booked in for a cornea graft in august which i am very nervous about. since the failure of my graft on my right eye 26 years ago i am very scared that it won't work for my left eye and i wanted to talk to people who have had successful cornea grafts. i know my condition is nothing like KC but there aren't any other forums or self help groups for my condition. i want to be positive about my operation as i have a 6 year old son who i need to be strong for so any stories would be greatly appreciated! thank you for your time. :D

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GarethB
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Keratoconus: Yes, I have KC
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Postby GarethB » Thu 29 Mar 2007 11:58 am

Hi Emma

Welcome to the forum.

Both my grafts are nearly 20 years old and have been a great success. The outcome initially was differnet in each eye but once stabilised the vision is good although I now need contact lenses again. That however is a small price to pay for the gift of sight.
Gareth

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ChrisK
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Postby ChrisK » Thu 29 Mar 2007 4:32 pm

Hi Emma,

Sorry to hear about your situation, I'm glad you found our little home though so please make yourself comfortable here.

I've just had a cornea graft and things are going rather smoothly. My sight is better than pre-graft and continues to slowly improve weekly.

I'd really pleased I had my graft and the experience has been much better and easier than I imagined it would be.

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Success stories please

Postby Anne Klepacz » Thu 29 Mar 2007 5:16 pm

Hi Emma and welcome!
My grafts are 21 and 19 years old (one in each eye) and although I had a few rejection episodes at the beginning, these were successfully reversed and the original grafts are still going strong. Knowledge about grafts and how to deal with rejection (if it happens) has been improving all the time. So although it must be scary thinking about another graft, hopefully your experience this time round will be very different.
Anne

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emma29
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Postby emma29 » Thu 29 Mar 2007 5:32 pm

thank you all for the kind welcome and thank you for the positive stories.
it is great to know that cornea grafts are better these days, when i was 3 there wasn't much knowledge of salzmans which i had on my right eye, i was in moorfields for ages! now i'm booked in to have my left eye done in the afternoon and i'll be home in the evening! 8)

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relli
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1 more success to add

Postby relli » Thu 29 Mar 2007 7:15 pm

Hello All, (& Emma)
i am 36 now and had grafts in both eyes around 18 years ago (keratoconus)
both have been successful grafts....i think i had 2 minor worries very early on over possible rejection, but a quick course of steroids (or in one case a small injection to the eye, and it disappeared)

Specs ever since , but have a great life with a beautiful wife and three gorgeous kids.

Emma, dont worry, you are older and stronger, you will sail through this graft..

best wishes to you all.

PS - Has anyone ever considered (or heard about Laser surcery on eyes that have had grafts???)

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GarethB
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Postby GarethB » Fri 30 Mar 2007 7:44 am

Relli,

There was a gentlman from Norway who had his eyes laserd post graft, but to be honest I have not heard of anyine in theUK having this done.

I do know in my hospital they say laser surgery post graft is out of the question.
Gareth

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Alison Fisher
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Keratoconus: Yes, I have KC
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Postby Alison Fisher » Fri 30 Mar 2007 10:08 am

Hi Emma :D

My grafts have both been fantastic successes. :D I hope I'm not jinxing myself here but I've never had a rejection episode and with my glasses I get 6/6 in each eye.

My elder daughter was six when I had my second graft. She came to visit me in hospital wearing her nurses dressing up outfit (she's seventeen now and would be most unimpressed if she knew I was telling you this :lol: ). Having already had one successful graft, and back then not knowing that much about them, I went in assuming that that one would be no different to the first so I only had my nerves to contend with and not worry about the outcome as well.

I don't know the first thing about salzmanns. Is it something that could affect your son? Until joining here I always worried about having passed KC on to my girls. My mother had it so it seemed like a logical possibility to me.
grafts in 1992 and 1996

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emma29
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Postby emma29 » Fri 30 Mar 2007 4:06 pm

salzmanns is a degeneration of the eye disease. i have a milky white scar covering over 75% of my pupil. my vision has become severely distorted, most things are blurry and everything else has a halo round it and i get real bad glare from lights and i can barely see at night! but i'm doing ok, just 5 months to go till my op. i'm going to get extra healthy so my body is prepared!! :)
i had my sons eyes tested last month, he has great vision (touch wood :lol: ) and i hope it stays like for him. thanks for all your nice words and support.

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Sajeev
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Postby Sajeev » Fri 30 Mar 2007 4:22 pm

Emma your more than Welcome, we know how it feels to be "out-siders" at some point and so there is no doubt you are one of us...

I like to think of this place as the cornea-group.org.uk (note the Cornea part)

What type of graft are you having, and please feel free to post when you want to!


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