UK Keratoconus Self-Help and Support Association

For anyone else here who's had (a) graft(s) -
What did you do about the bit that was cut out of you?
Did anyone else have any strong feelings about it, or thoughts or ....?
Did anyone see it, or ask to keep it, after it was cut out?
If so, what did you do with it, and how do you feel about that now?
When I booked in for my graft (last October) I'd been intending to ask to keep it. That was one of the questions I asked at the appointment when we booked the date, and they seemed to think that would be quite possible. Then, on the day, with all the hoohah (see another thread about that!) I forgot to ask.
Realised what I'd (not) done while still at the hospital the same evening. But by then, the surgeon - my infamous former-consultant! - had thrown it in the bin.
Well, OK, done with it whatever Health-and-safety approved process they have for disposing of discarded human tissue.
Much the same as chucked in the bin from my point of view.
Gutted. But had so much else to bother about, just couldn't cope with that too. Had to leave it to be delat with later.
THen, yesterday, was sitting in the local deli with piece of cake and cup of tea, and suddenly found myself in tears grieving for lost bit of cornea.
It had been a bit of me for 46 uears 9 months, less a day and a few hours. And it had been doing its best. OK, its best wasn't giving me terribly good vision, but it was no more to blame for the genes it had inherited than any other bit of me. And it was doing what it could.
And still would be, if I'd had more sense..... but that's another thread.
Anyone else here find yourself mourning for the bit they cut out? - or even feeling a need to say "goodbye, friend" to it properly?
Did you find a way to do so that helped you? - with or without the piece?
Rosemary

Hi Rosemary
My old corneas were so useless by the time they were replaced that I can't say I was sorry to see them go. But I was very pleased to hear from a researcher at our very first conference back in 2001 that she was sent old KC corneas for her research into the condition. I don't know what proportion of KC corneas are used in this way, but I very much hope that mine might have been used in this way and furthered the understanding of KC.
Anne

Rosemary

My old corneas were used for study purposes; foozen, sliced really thin and subjected to eletron microscopy to determine the extend of damage caused by (a) lesions, (b) abrasions, (c) ulcers, (d) hydrops and (e) keratoconus itself!

Andrew

Rosemary,

I am not really sure what happened to my cornea, but as I could never see anything much out of it apart from a blur of colour I wasn't very upset! I can understand your point though, it just didn't hit me like that until I read your post.

It would be good if my cornea was used for medical research and / or teaching purposes but you never know.

If human tissues are to be disposed of there are strict guidelines and documentation as to how they go about it, so no real worries I don't think.

Thanks for the interesting topic! Gave me something to think about!!

Hi,

Perhaps I can introduce myself, since this is my first post here. I'm a friend of Rosemary's, here because of my concern for her.

Rosemary, your reaction strikes me as perfectly normal, if perhaps unusual. But those bits of tissue have clearly had very much more influence on your life than, say, an extracted tooth. Even if your surgery had gone smoothly, it still marks what could turn out to be a change in your life.

If your reaction continues, I wonder if their might be some benefit in a little "goodbye" ritual? Perhaps lay a few flowers in a favourite place, maybe with a sympathetic friend or two; perhaps there's a poem or few words you might find suitable. I think if I had to invent a ceremony of this type for me, I might chose the place where my parents ashes were scattered, leave a card and a flower - I imagine you could think of some parallel which would feel right for you.

When somebody dies, it helps many people to mark the event with a ceremony - a funeral. While this is not a death, perhaps something similar might help? Just a thought.

Barbara Davis

Welcome to the forum.

Actually there are two things that people who have had transplant surgery need to cope with: the first is the removal of a living part of themselves; more than the removal of a tooth.

The second is the knowledge that we live every day with our lives enhanced by the generosity of another family: in my case two families. A little ceremony with some close friends would be an important way of coping with both of these realizations. Excellent idea.

Why not write some words and gather with friends and say goodbye to the old and 'thank you' for the new?

Andrew

Barbara! - good to see you here.
I don't know about excised corneas being used for research - no-one mentioned it to me. WOuld they be likely to? - or even be likely to have to ask my permission? I'm sure I'd have given it if they had - and it might have reminded me to ask to see the bit before it got despatched to the researchers.
The ward staff, when I finally remembered it before I went home, seemed to think it would have been thrown away long since.
Andrew, thanks for your comments. I haven't posted much about the donors (deceased/family) mainly because, well, I've been posting rather to much stuff on here, one way and another. Please don't anyone think it's because I don't care or even think about them.
Also because I've read threads on here about donors before and don't know what I could add, but don't remember anyone posting about the bits of them that got cut out before.
Maybe I'm just unusual ........ both my eyes were at the stage, they said, where a graft would be indicated, and it was up to me to chose which to do first. SO it wasn't a simple decision to go for the worst one, and I could have chosen the other one, right up to the day of the op.
Rosemary

well each to his own but this is the weirdest KC post I have ever seen, I had a graft last November, and not once have i thought anything about that useless bit of tissue that was removed, I couldnt care less, although that said if it did go to research then that's all good.
I was more concerned about the fate of the donor, as this would possibly have been a sad situation, for their friends and family, and I am eternally grateful that the donor gave their eyes/ cornea to medicine, adn I will be doing the same.
the idea of having some sort of ceremony just strikes me as odd, but like I said each to his own.

i am with Dweezil on this one.... GOOD RIDDANCE to my old cornea... maybe i would have benefitted from pouring lighter fluid on it and burning it!
And in the same breath. i think the new one is a miracle.

am not there yet, I can't see anyhting out of grafted eye yet, still on the anti rejection drugs, so I am no worse or better off- fingers crossed for results in a few months with lens or glasses!!