Glad to Hear Your News

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Diamond
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Keratoconus: No, I don't suffer from KC

Glad to Hear Your News

Postby Diamond » Tue 01 Jan 2013 10:40 pm

I hope you don't mind me posting here or find it inappropriate. I was doing a late night search for experiences of people who'd had corneal transplants/grafts and came across your forum.

My mum died in September and my sister and I offered her corneas for donation. Actually, we offered to let the donation team do a full survey but the corneas were the only bits they could use. Mum died of multiple organ failure so I guess the rest wasn't going to be suitable. Anyway, my sister and I knew that mum would have wanted to help anyone she could. She always did when she was alive.

So you can imagine that this first Christmas and New Year without her has been very hard. Actually, on New Year's Day a year ago, we were all at home with her and she made our New Year's Day dinner. That was the last time. But one thing that has been good to think about during this period is that there might be people who could see their own loved ones better this Christmas because they got Mum's corneas. So it's good to hear your news when you say that you don't regret having your grafts and that it's helped you to go back to work or do other fulfilling things. I'm glad to hear it. :)

Anyway, like I say, I hope it's not inappropriate that I post here. Sorry if so.

Happy New Year - all the best to you.

longhoc
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Glad to Hear Your News

Postby longhoc » Wed 02 Jan 2013 8:52 am

Hi there Diamond

I can't say anything much better than the hopelessly inadequate "thank you so much for your post".

It is all the more moving because of your recent loss. I know myself that at this time of year, you enjoy your time with your family but you can't help thinking of everyone who is not here any more. It makes it all the more poignant.

And "thanks" does not even begin to cover the gratitude I feel towards the families of organ donors. Of any sort. But corneas in particular is such a hard decision. Donation isn't ever an easy subject at a time of the death of a loved one but the proportion of those families who consent to cornea donation is always lower than for other organs. I guess this is because of how people feel about eyesight.

But without the gift of donation, I don't like to think about where I'd be now with my vision. After 20+ years of pain, sight loss and the psychological impact of running out of options for my sight I actually now believe I've got a cause for optimism because of some brave soul and their family who allowed my transplant to take place. With a corneal transplant, it's rarely just a case of having the procedure and then you're done. Usually, it's the first step along a longer journey. That's why we moan a bit now and again about post-graft outcomes. But at least for those of us who've benefited from a transplant, we've now got a journey ahead of us rather than facing a dead-end.

I myself don't believe that anyone is ever really "gone" -- so long as we remember them. So try to keep your Mum in your thoughts and she'll always be there when you need her to be. And know too that someone, somewhere, has had their life transformed because of her kindness and the kindness of you and your family.

Best wishes

Chris

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Anne Klepacz
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Posts: 2285
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Glad to Hear Your News

Postby Anne Klepacz » Wed 02 Jan 2013 2:40 pm

Hello Diamond,
Chris has already said it all, but as someone much further along the transplant journey (I had new corneas in both eyes around 25 years ago) I just wanted to say how eternally grateful I am to my two donors and their families for giving me my life back after several years of rapidly deteriorating sight, fears that I would lose my job and home (because how would I pay my mortgage if I couldn't work?), depression and anxiety. Corneas may not be life saving in the way hearts and kidneys are, but they certainly make a huge difference to those of us that recieve them. So you can be assured that all the good your mum did while she was alive continues for some complete strangers, as well as for you and her family. Thank you and all the other families that make this difficult decision, and thank you for posting here.
Anne

GrandPaClanger
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Posts: 236
Joined: Sat 27 Mar 2010 9:05 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Glad to Hear Your News

Postby GrandPaClanger » Wed 02 Jan 2013 8:06 pm

Hi Diamond

Welcome and thanks for your post, and for the decision you had to make at a very difficult time. I had KC for 30 years before I needed a graft. I could no longer tolerate a contact lens for any length of time and was in a considerable amount of pain. I was basically going to work, coming home and going to bed because of the pain. As you can imagine this had a massive impact on not only my quality of life but was also starting to effect my work and probably most concerning my marriage. I was grafted in May 2011. Whist it has not been easy ( i have\am suffering with the side effects of the drops you have to take) it has been well worth it to get my life back on track.

I often thimk about my donor be it when I look in the mirror and especially at times like Christmas.

Many thanks again for all that you have done

Ian


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