Things I feel I ought to know but don't

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Alison Fisher
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Things I feel I ought to know but don't

Postby Alison Fisher » Mon 27 Mar 2006 2:30 pm

Since I started searching round on the internet for information about the chances of passing KC on to my daughters the other week I've found that I've ended up with more questions about myself than about them. Considering it's around twenty five years since I was diagnosed I really ought to be more knowledgeable about things than I feel I am.

Bearing in mind that before joining here I've never spoken with anyone else who had KC I've been a bit confused by the apparent reluctance for people to have grafts. For me, after many painful years struggling with contact lenses agreeing to the first one was the easiest decision I have ever had to make (after the amount of pain I had with the first agreeing to the second was one of the hardest, but that's another story). Surely my two very successful grafts don't make me anything unusual do they? I can't imagine choosing to carry on with contact lenses when the option is there to have a graft. What am I missing? :? Sight with my grafts is far from what non-KCers take for granted but life is far better with them than it was with lenses.

Secondly, what is the general experience when it comes to how long grafts last? It took me back when I read somewhere on the 'net that they have a ten year life span. One of mine is coming up on fourteen years old and the other will be ten years old on Saturday. I'm probably going to jinx myself by saying this but they are both fine. I almost feel like I am wasting my consultant's time when I go for my annual check-up. Again, surely that doesn't make me anything unusual does it? :?

A perplexed Alison

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Andrew MacLean
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Postby Andrew MacLean » Mon 27 Mar 2006 2:37 pm

Alison

I am sure that having two successful grafts is not unusual, although some figures suggest that thre may be as high as a 35 percent failure rate for cornea grafts, the figure is much lower with KC patients.

This is because our condition lends itself to cornea graft as a management protocol.

Bur the graft does not cure Keratoconus. like lens wear, Intacs, C3R etc it is used to manage the condition.

You ask about how long a graft will last: the answer is the age old chestnut about the length of a piece of string. My own expectaion is that I shall not need to have my present graft nor my planned graft replaced during my life time. If I do, I shall cross that bridge when I get to it.

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Postby jayuk » Mon 27 Mar 2006 2:38 pm

Alison

Its ok to ask and think of these questions! Beleive me I do the same!

As far as Graft Life is concerned....I can assure you that there is not one person on this planet that can tell you how long a graft lasts.......and if anyone does!.....Smile and question them heavily!

The reason why I say this is because every single case of KC is unique and every single Transplant is unique!...There is an argument, very valid in my opinion, which goes to suggest that grafts should be age-matched.........this I put to my consultant and few others; and it appeared that the life of the graft in the host, and the life of the tissue at transplanation has very little to do with how long it will lost on the recipient.....however I stil do question this as we dont actually know how long endothelial cells last...and what causes them to dissappear (as in cell destruction, time. factors etc).

However, there are grafts which last all of life time (30+ years) and those that last 4 weeks (acute rejection). The longest graft that I know of was with a family friend who had it in 1976 and to this day sees 20/20 with a standard RGP......so thats 30 years their!......

I think the annual checkup is VERY important and should be continued for the rest of your life.....dont feel you are wasting peoples time......as it can be a good indicator of potential surface issues on the graft....

Hope that helps

J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Alison Fisher
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Postby Alison Fisher » Mon 27 Mar 2006 2:45 pm

You don't know how long a piece of string is Andrew? :shock: :P :wink: I was just wondering what people's own experiences were on that score, not expecting a definite answer but just something to compare myself to. Like I said, consdering how long I've been living with KC I really ought to be more informed than I am.

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Sweet
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Postby Sweet » Mon 27 Mar 2006 2:49 pm

Alison,

Yes grafts are essential to a lot of people here and can be extremely successful and i am vey glad with how things have gone with you! :lol: However they are generally seen as the last option in dealing with KC, being when you are at a stage where lenses just don't help anymore and there is no other choice.

Because it is an invasive procedure and there are many risks including rejection most people will have it at the last moment as a final resort option. As there are so many lenses around now and indeed other options including intacs and cross linking many would like to try those first so that if they didn't work they could go into having a graft knwoing that they had tried everything else.

Grafting should never be seen as the only way to treat KC for good as most will never need one, and some who do are too scared to get one. I played about doing nothing with one eye that didn't see anything and couldn't tolerate lenses for fifteen years and relied totally on the other eye until i had so many problems with the good eye that i decided that it was the right time for me to get surgery. I needed to feel that it was right for me, that i was at a place where i just couldn't cope anymore and that it was the only option i had in order to see. A lot of people here feel the same way and will carry on until they just can't see well enough anymore and need to do something about it.

Surgery can never offer you a certainty that you will see well and there is never going to be a 100% chance of it all being successful, so all these things need careful consideration before you jump in to get it done. On how long grafts last i was told years ago that it would be about ten years but to be honest there is no clear cut line. Some here have had them for a lot longer so it all depends on the indivdual as every case is so different.

Take it easy and i'm glad that your annual check ups are going so well!! Keep going if only to get some good news as we sometimes don't get enough of that!!

Sweet X x X
Last edited by Sweet on Mon 27 Mar 2006 2:53 pm, edited 1 time in total.
Sweet X x X

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Andrew MacLean
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Postby Andrew MacLean » Mon 27 Mar 2006 2:52 pm

I appreciated that, but my answer was meant to imply that I have not yet found the end of my piece of string.

I know from research that after many years a sc=uccessful graft can simply fail.

You ought to be aware also that there is a higher risk of cateracts, sometimes occurring naturally and sometimes induced by steroids, and there semms also to be an increased risk of glaucoma, also potentially steroid induced.

Sorry I didn't make my oprignal answer more clear. Put it down to the aftermath of a busy weekend. 8)

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Alison Fisher
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Postby Alison Fisher » Mon 27 Mar 2006 2:58 pm

Hi J

Yes it does help. Thank you. :D

I tried to ask questions similar to yours at the time of my first graft but the shutters came down very fast and I got nowhere. :( I'm one of those people who in the right circumstances can easily be intimidated and don't like to make a fuss. At the time I wasn't in a good place emotionally so I shut up and went with the flow.

Don't worry - I have no intention of not going for my annual MOT (as I call it). I can't imagine life without spending at least one day a year camped out in my hospital's waiting room. :D

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Postby Sweet » Mon 27 Mar 2006 3:03 pm

Hehe fun isn't it! LOL!! :wink: :roll: I do meet a lot of nice people though while i am waiting, as sitting there unable to read half the time it does get very boring, and i just can't stop talking!! Hehe my parents always said when i was younger that they were sure i would be very happy in the corner talking to the potted plant if no-one else was around!!! LMAO!! :roll: :P

Gee the mind boggles!! :roll: :P

Sweet X x X
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Postby jayuk » Mon 27 Mar 2006 3:13 pm

Alison

That is normal..as when we speak with consultants we generally think that what they say is right and dont question them.........but experience has shown that this is no longer the case and its good to question no matter how silly the question is........


J
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(C) Copyright 2005 KP

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GarethB
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Postby GarethB » Mon 27 Mar 2006 3:20 pm

With grafts there is a remote chance KC will return.

Screening techniques are btter developed now to understand the extent the cornea is affected so what size graft is needed.

It is also easier to detect a donor cornea that has the potenmtial for KC and so reject its suitability.

18 years ago, such technology was not there and even then to have KC return was extremely rare which is what makes my situation quite unique.

My issue is when people regard grafts as a cure and are told it will cure their KC.

Reality is most grafts require correction with glasses or contacts. I am at the contact lens point.

Still very happy I had two grafts as I have gone from being registerd with partial sight and using a white cane to full sight when corrected, even if the time I have this luxury throughout the day is vary variable.

My peice of string regarding KC is 20 years old and still the end is not yet in sight :(
Gareth


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