Transplants- is it only me???????

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morag
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Transplants- is it only me???????

Postby morag » Sun 22 Jul 2007 8:54 pm

Pat A wrote:...I've only seen one person post that they have any regrets - most people haven't looked back!
this is a quote from Pat A on the topic eye test worry dated 20th July 2007 time 23.46.

I presume she mean me!
I’m shocked that I’m I the only person who has had a transplant who has regrets about having it???
Did everything go OK for everyone else?
Was everybody else is transplant go OK with no side effects?
Does nobody else suffer?
?
Morag

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Vic
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Postby Vic » Sun 22 Jul 2007 9:46 pm

Personally, I would say that for me there is quite a big difference between having regrets, and things not going ok. I had a rejection episode and some problems with my sutures after I had my graft (almost 6 years ago) but I do not regret having it done. Yes there were problems but my vision with the graft is significantly improved compared to what it was like before. I'm sorry you had and are continuing to have so many difficulties with your graft, it sounds as though you've had a rough ride with it.
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morag
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Postby morag » Sun 22 Jul 2007 9:52 pm

Thanks for your reply it sounds odd but its good to know Im not alone
Thanks
Morag

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John Smith
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Postby John Smith » Mon 23 Jul 2007 12:06 am

Hi Vic, yes, know what you mean.

Vic and Morag,

I had nine rejection episodes with my right eye after a PK graft, and was left with "very few" endothelial cells - so much so that my vision remains cloudy in the morning, and my ability to drive is variable (some days I can, some I can't).

But regrets? Absolutely none. I've got FAR better vision now than I could have dreamed of back in 2000.

Some people I've spoken to are surprised that after all the trouble I'd had I would still recommend grafting where necessary. Well, IMHO, grafting may be flawed, but it works.

I certainly hope that we can get a mainstream procedure to manage KC that's better than grafting, but in the meantime, I'm not biting the eye that I can see through!
John

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GarethB
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Postby GarethB » Mon 23 Jul 2007 7:45 am

2 grafts no regrets despite KC coming back in the old part of the cornea where the graft is attached to in the right eye.

Why, because without the graft I would have missed out on 20 years of vision. I would have never achieved some of my lifes ambitions, never of got the degree in the subject I wanted, seen my wife, never seen my daughter born.

So the quality of life it gave me for 20 years it was all worth it. I made it through that so I know I can make it through the return of KC too and the problems that causes my graft.
Gareth

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Anne Klepacz
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Transplants - is it only me?

Postby Anne Klepacz » Mon 23 Jul 2007 4:52 pm

I too had various problems along the way with my grafts, so it was far from OK for a few years, but like Vic and others, I don't regret having them. I don't remember being told anything about risks at the time, but that might be because I chose not to 'hear' - I was so desparate for something to be done to give me back my life - or it might be that 20 yrs ago, when I had my grafts, doctors weren't so good at talking things through beforehand. I do remember having my first real conversation about what a graft involved when I was already on the ward waiting to go down to theatre! I think for most people now considering whether to have a graft, things are very different. Surgeons are much more willing to discuss the risks and benefits (we had an excellent talk by John Dart setting these out at our 2005 conference). And of course, graft techniques have come on a long way since then and continue to improve all the time. So I'm sure some of the things that happened to us 'oldies' are much less likely to happen now eg I had my first rejection episode in eye 1 shortly after I'd had eye 2 grafted. That is now acknowledged to be a risk and hospitals now will 'keep an eye' on the first graft when they do the second - but such risks are only recognised after they've happened to a few people! And despite all the improvements in recent years, no surgical procedure is ever risk free and a few people will unfortunately experience the downside. Would I have gone ahead with my grafts if I'd known all the possible risks? I was a wimp in those days, so maybe I would have chickened out. But if I had, there is no doubt I would have lost my job and probably spiralled even deeper into depression. So I'm glad I did make the decision I did - it did eventually give me good corrected vision in both eyes, I did keep my job, I did get my life back. In the years since the KC Group began, I've probably talked to several hundred people who've had grafts and know that for the majority it does all work out well, even if the wait for better vision is sometimes longer and more frustrating than we'd all like. And yes, there are a handful of people for whom a graft doesn't work out, or who continue to have problems. Which is why most of us would say that a graft should only be considered when all other options have been exhausted. But also why most of us would say that it is a sight saving option which needs to continue to be there. Perhaps with the new options for KC that are becoming available, grafts will one day become a thing of the past. But that won't happen tomorrow and in the meantime, for some a graft will be the right decision for them. I hope too, that we can continue to listen to one another and learn from one another, while recognising that what's right for one person isn't necessarily the solution for another. And that a forum like this one can also help the health professionals to recognise that KC isn't just about eyes. Coping with distorted or deteriorating vision can be scary and affect self-confidence and self-esteem, something the medics aren't always tuned in to. So I hope it's something we can help each other with (perhaps a topic for our next conference?) and also help the professionals to look out for.
Anne

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Val G
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Postby Val G » Mon 23 Jul 2007 6:17 pm

Anne
Your advice and comments are always spot on! After the long haul you predicted I am eventually experiencing excellent vision with my new lens 20 months post graft.
All
We have to remember the majority of health professionals (me included) are doing their best. But not all outcomes are not good. It's science not magic! is my motto at the moment. I hope that we can continue to support, advise and share our experiences with each other through this forum. I have found it invaluable through my bad times.

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martwoman
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Postby martwoman » Wed 25 Jul 2007 6:14 pm

sorry to hear you have had so many problems i only had my DALK last week and although at the minute i have not had any pain i had to have another operation on right gratfed eye as the the centre of the graft was not attaching in the middle although he said it was healing eceptionally well on the edgeds. So yesterday he put a bubble in the to push my cells forwards to see if this will help it attach . After wards I had to lay on my back and look up at the ceiling for about 8 hours how boring. but surgeon looked at my eye this afternoon before i was discharged and says he is really happy and it looks like it is trying to attach although he wont know for a week wether the bubble is working and siad he wont know for about 4 weeks wether it will have worked. I was feeling very down when i was told that it was attaching i started to think i shouldn`t have had the graft done but after a good nights sleep i thought my vision cann`t get any worse then what it was so so what if it was attaching and i have to have a PK graft done a little feeling unwell after the anaestic is worth it to have better vision. but hopefully it wont come to that and my surgeon seems to the bubble will work
teke care
martwoman
remember theres always hope upon the horizon although at times its hard to find but seek and you will find

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Louise Pembroke
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Postby Louise Pembroke » Thu 26 Jul 2007 12:19 pm

I wouldn't say my journey has been easy, but I know that others have had it much tougher than me.
I was deeply depressed as a teenager with deteriorating sight and ongoing lens/solutions problems. KC in part but not totally lost me my career at that time.
First transplant went very well, no problems, despite a significant degree of post graft astigmatism an RGP gives me very good sight in that eye.
The second transplant I could not define as a success at all. It survived, but there's little useable vision. I had episodes of rejection, then blood vessels growing into it which needed to be sealed off with a laser. A few stitches had to be replaced early on as well.
So I have effectively use the one eye and that's fine so long as I can use that lens. Without that lens I would be totally lost and unable to read/write etc because there is such a big difference between my vision with and without the lens.
Having grafts wasn't a choice I had to have them. Before the first I had a massive hydrops in that eye which further impacted on visual acuity. Without that graft I wouldn't be able to wear the lens and wouldn't have the sight I have in that eye.
As for the other eye, yes it feels like nothing was achieved but I had to try and we can't foresee what will happen, it's a risk.
I don't regret having my grafts, but like most people with them of course I worry about the future and hope my grafts survive as long as I do
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

morag
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Postby morag » Thu 26 Jul 2007 7:11 pm

Just to say thank for being so open and honest - this is all I ever wanted to know
I have read each one, and feel as though we do understand each other and do respect everything we have all had to go through, no matter how our journey went we are all on a similar road
cheers
M x


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