UK Keratoconus Self-Help and Support Association

(T - Triggering, please be careful)


Was just wondering here if anyone just watched the Casualty/Holby programme? They combined the two as it is organ donation week and wanted to get some public awareness.

For anyone who didn't watch it, just to say it was very sad, and the public were asked to 'vote' on who they thought should get a organ donation from someone who had just passed away. It was obviously all fictional but made you wonder, especially as some here have had grafts or are thinking on it.

I just wanted to say having worked on both sides as a nurse, first in ITU (intensive care) where i have been there supporting families having to make the worst decision of their lives on organ donation for relatives and going through all the brain stem tests needed, and now being in 'A & E' where we struggle to save lives but sadly sometimes have to go down the organ transplant route, and am just glad for some public awareness.

I know that to some this may seem very depressing, and yes it is, but sadly we all know that our corneas have to come from somewhere and while we don't really want to think about it, someone does. It is sad that sometimes the only time people talk about it is when it is too late and they are having to decide on whether their relative would have wanted it. I honestly wouldn't be posting this if it wasn't for the fact that this DOES affect some of us personally in needing grafts, and also for the fact of having just been there myself a few weeks ago. This graft i have just had came from somewhere, and even to me i do find that rather depressing.

As the programme bluntly said, there are over 8000 people waiting for organs but only just over 400 people had one last year. More people sadly lose their lives waiting for a transplant than the number who actually receive one. (This isn't just corneas)

Sorry to be morbid but just thought i would say something as i have just had a graft myself. It is a difficult subject to talk about and i know that medics are probably glad now of some awareness and to stop putting this as such a bad topic. I am NOT suggesting that everyone agrees here that we all need to be on the organ donation list or trying to influence anyone, just thought that it was a good topic to discuss. I do not want to put my own opinion here as you are all obviously free to have your own!! I just thought that after happily receiving a graft from someone a few weeks ago, that after this programme it would be something useful for us to write about.

I also just wanted to say that after working in 'A & E' for over a year now, i have only found three organ donation cards on patients, even though some of them maybe would have wanted to donate. That is a very, very small number in comparison to the hundreds of patients we see every day. We hope to never need to use it or have to hand it over to someone to look on the organ database, but the real truth is while this is devastating for patients and relatives, someone could really benefit from a tragedy.

Just wondered what you thought?

Ok ..... enough said i think, as i have depressed you all already.

Love Claire X x X

I wrote a post on here about a year ago encouraging people to get a donor card, explaining the difficulty I had experienced in obtaining one, and how it is possible to register online. So I just wanted to inform others that it wasn't strictly necessary to get a card.

At the time I felt it was important as I had benefitted from a graft, I never in my worst nightmares thought that only a few months later I'd be informing the doctors of my Mum's wishes to be an organ donor. She had carried a donor card for as long as I can remember.

The need for a post mortem made it impossible to use her organs due to the delay, although despite this she was still able to donate tissues, including her corneas.

So now I've experienced it from both sides.

I know its not a pleasant subject, but it's an important one. As mentioned in the BBC programmes, only a fraction of the people on the waiting list get the transplants they need. This is a crazy situation.

In so many cases it is indecision on the part of relatives that prevents donation, as time is such a critical factor.

It is inevitable that people may have concerns, and the whole purpose of the BBC's "DoNation" week was to inform people and allay any fears.

Many of us on here have or will benefit from someone's generosity in this way, so please, consider getting a donor card.

Rob.

Rob, thanks for that, yes you do not need to actually get a card as it is worthless if you are not registered on the organ donation database, but it does make medics life a lot easier. As you know time is a crucial factor and sometimes it is just too late by the time we know their wishes.

I understand the point with your mum and am sorry to hear that, i went through the same thing with my mum and having a PM meant she couldn't donate either. I think it is what she would have wanted, though we didn't talk about it which makes the point that we need to discuss our thoughts on it.

I know that my dad would not have agreed to it though, which i find frustrating because unless i get married he is my next of kin and i know he wouldn't agree for me either. That is one thing i think needs changing, because this is my wishes not my NOK, and while i know how devastating it would be for him, i would like to know that what i want is taken into account.

Love Claire X x X

That's very interesting. I wasn't aware that the next-of-kin can overrule the deceased's stated opinion.

We were never asked when my Dad died, and I was too upset at the time to think about suggesting donation (though as he had a PM, it would have been unlikely anyway).

I do begin to think that a system of the medical staff being legally obliged to ask for permission would be best. At least that way people who would be happy to see their loved one's organs reused get asked. It shouldn't be up to the relatives to offer - they've got other things to worry about!

Hey there John

Medics as far as i know, and have experienced do ask permission, or at least they carefully ask if the relative had a donor card or would have wanted their organs to be donated. There is an organ transplant co-ordinator in every hospital who will follow this up if they agree to it, or indeed need some support to make a decision. A lot of people have never thought about it before or indeed discussed it with their family, so it is very difficult.

I do think though that the donors rights need to be emphasised, as you stated, most people are not aware that your NOK can over-ride your decision. I personally find this frustrating as this is not their rights to decide on, and sometimes they are not that close to the deceased.

All politics you could say! LOL! And i have personally had way too many of those, so maybe i will just get married after all to someone who will carry out my decision!! LMAO!

Claire X x X