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

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Louise Pembroke
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Hi from Lou

Postby Louise Pembroke » Thu 26 Jul 2007 7:38 pm

Hi Morag, just wanted to say -
we all need to know that we are not alone in our struggles and to have our individual struggles heard and acknowledged, that's really important.
I know for myself when I've been having a hard time and read accounts of the everything is wonderful variety, I've felt like throwing something. It's like being told you will cope at a time when you need others to just hear your distress and let you be in it for a while. We decide for ourselves in our own time if and when we can cope. I know I don't like being 'jollied along' when I feel c**p. Sometimes I need to hear how hard it's been, that can be more helpful sometimes!
I think we learn to be so damn brave or others can expect it of us. I spoke with a kidney transplant patient and I so appreciated that he shared certain feelings with me such as the negative feelings around transplants which can be quite taboo. People can expect us to feel so damn grateful and happy for the 'gift of life or sight' and overlook the fact that we can feel depressed about the long term implications or distressed at the complications. I'd really like to see a paper written on this in the clinical journals but written by those of us with experience.
I tried to get funding for a sensory impairment and mental distress conference to explore some of these issues but wasn't successful.
Anyhow, all the best
Lou
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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GarethB
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Postby GarethB » Thu 26 Jul 2007 8:31 pm

Louise,

You are right when you say
People can expect us to feel so damn grateful and happy for the 'gift of life or sight' and overlook the fact that we can feel depressed about the long term implications or distressed at the complications.


I went a long time feeling down because not one but two people had to loose a life for me to see. After a lot of help that is when as a person I changed again and now confront obstacles head on. To me I owe it to those who donated their corneas to get the most out of life and live it to the full, something that was denied them.

Some will think me foolhardy perueing dangerous activities and my career which ion the past has carried great risks to my vision. I dont just see, I observe and take the requiered precations to protect my vision which is essential for high speed sports.

I owe so much to those people I can never repay them, only be thankful for every days extra vision and to enjoy life each day to the best of my ability. If i can help others and help them enjoy life then that is a bonus.

I do what I do as much fro them as for me.
Gareth

morag
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Postby morag » Fri 27 Jul 2007 8:49 am

Louise I totally understand what your saying I think we are on the same wave
Thank you
Morag x

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Sajeev
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Re: Transplants- is it only me???????

Postby Sajeev » Sun 29 Jul 2007 8:47 pm

I just wanted to say it was nice (if that is the right word to use, ...but reader, you know what I mean) to read this thread due to its frank candid flow you can feel with it. Thank you for that.

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Lynn White
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Re: Transplants- is it only me???????

Postby Lynn White » Mon 30 Jul 2007 7:28 pm

Louise

I am sorry your conference didn't work out because this IS an important issue. I do think that people with KC (and in fact, as Anne pointed out in the pub after the conference, ALL people with corneal dystrophies and related problems) have a hard time because its so very hard to explain to others what you are going through. There is this concept that if you have a graft, then you are "all right now" - its hard for people to grasp that you may have months and months of problems before things settle down and they may get confused that you still cannot see well at the moment.

Regrets is a difficult word. I am sure many of you, after going through a rejection episode or some other difficulty with the graft think "Ohhh why did I do it?" Then when it settles down you KNOW why you did it! I think you can only reflect on this a long while after the event when you look back on the roller coaster of ups and downs and see the overall improvement.

Professionals on the whole do understand that visual problems cause distress. However, their job is to look after your eyes and get you the best possible visual function. In a routine appointment, there is not much time to talk about how you feel and even if someone asks you how you are coping, it is really hard to just come out with it and say you are not. But this is not to say that your problems with coping are not important - its finding a way to express them and get help for them.

Anne - I think it is a really good idea to bring this topic up at the next conference because it is something the members can contribute to in a big way. And because you make DVD's of the conference it can be used in training and for teaching purposes. Perhaps Louise can input her ideas for the conference she was going to organise?

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Anne Klepacz
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Re: Transplants- is it only me???????

Postby Anne Klepacz » Mon 30 Jul 2007 7:52 pm

Yes - I was really sad that Louise didn't manage to get funding for what was going to be a great conference, and would have been relevant for much more than KC. But I'm sure we can pick up at least some of those ideas, and I'm sure lots of people will have contributions to make. And we've got almost 2 years to plan something!
Anne

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Sajeev
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Re: Transplants- is it only me???????

Postby Sajeev » Tue 31 Jul 2007 12:43 pm

I want to pledge my support, partly because its a forgotten subject and partly because I would like to see the down trodden truly triumph. I remember it was quite forward thinking back in school where subjects like mental health and other health issues was part of the curriculum. I just found it all very fascinating and cool that they did this back then.

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

Postby morag » Tue 31 Jul 2007 9:02 pm

Its great when positive feedback comes back and people do understand what I’m talking about
Thank you to all of you who have commented back – its great to see something truly good, and it make me feel a little more human(and not “the angry one”)
Lynn– do you have KC?
I do regret it every single day, I regret it, I did not have a choice as far as I was aware even my option of not having it was taken away, as I was told I was going blind so what option did I have???
It is so sad that in 2007 there is so little time to discuss with the patient how they feel and how they are coping - what a very sad country we live in.
I believe that it is all part of the whole package, the mental suffering in itself is so badly supported, the coping alone in your own head of what’s going on, not even think about the pain and after care needed to the operated eye!!!!
I would have thought that surgeons need to know all the facts – to me its like baking a cake (I simplify things) you get all the ingredients, you mix them up, put in a tin, put in an oven take it out- and that’s it .Its only half finished, what about putting it out to cool, putting it together and the most important part tasting it – why else bake a cake in the first place
Sorry about that rant it’s my type of jargon!!!
I would just like to add that I totally agree with Sageev more and more needs to be in support of these issues
Lets do it, why not??
Morag


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