I want Emily to live...3 minutes of your time could save her life

EmmieHarris · 11 April 2006 at 10:49PM

I'd like to tell you about my special friend Emily. She's 22 and she was told last February that she had about a year to live unless she receives a double lung transplant. She and I both suffer from Cystic Fibrosis (CF), the UK's most common life-threatening genetic disease and one for which there is no cure.

However the reality is bleak as 50% of those desperately waiting for a lung transplant will die before receiving one due to the chronic and increasing shortage of organ donors in the UK.

With time running out for Emily, and having already lost 15 young friends of ours whose lives were lost waiting for an organ donation, we have taken matters into our own hands and launched the Live Life Then Give Life Campaign to encourage people to think and talk about their wishes regarding organ donation, and to sign up to the National Organ Donor Register so that they can save the lives of others after their deaths.

To read our stories and find out how you could in 3 minutes you can sign the National Organ Donor Register and possibly save the lives of some of the 400 people annually who die as a result of the lack of organ donors in the UK, please take a few minutes to look at our campaign website:

https://www.livelifethengivelife.co.uk (registered charity no. 1095611)

Thank you very much for reading this message:smilie:

jobbingmusician · 11 April 2006 at 11:13PM

I wonder if we are enough people, on this messageboard, to start the campaign that's so badly needed.....

WHY ON EARTH DO PEOPLE HAVE TO REGISTER TO DONATE ORGANS? WOULDN'T IT BE MORE SENSIBLE IF PEOPLE HAD TO REGISTER NOT TO DONATE THEM?

If the default was that people's organs were used, suddenly there would be enough for everyone, I'm sure! Donating organs would be the social norm, and the only people to 'opt out' would be likely to be those with religious objections!

Yes, I'm on the organ register :j

What do other people think?

pavlovs_dog · 11 April 2006 at 11:29PM

certainly sounds like a good idea :T

HugoSP · 12 April 2006 at 12:01AM

Emmie and Emily

Either of you would be welcome to my loungs in the event of my death if you could use them.

I've just included my details and will be telling my family. Once I'm gone that is their first priority.

All the best and good luck to both of you. I hope you both live long and healthy lives, the campaign you've launched is testiment to your determination to keep going. It is also a measure of the contribution you will continue to make to society in the life both before and after you each receive the help that you need.

My heart goes out to you both and your friends who so desperately need what others cannot use - that too will be available when my time comes.

Keep up the good work.

Hugo

Rachel021967 · 12 April 2006 at 12:05AM

I'm also on the organ register and have carried a donor card all my adult life however until I married, my mother was my next of kin and flatly reused to allow my organs to be donated even though I told her that it was my express wish to donate any part of body to help another after my death. Unfortunately, as I understand it if the next of kin are against it the organs cannot be donated even if the donor put it in writing and carried a donor card. Is there anyway around this?

HugoSP · 12 April 2006 at 12:16AM

I suspect that once the case has been argued successfully, the organs unfortunately would be useless.

I like the idea of having to opt out of the scheme. I don't feel that our rights would be affected, as we would still have a free will over this. We would just have to overcome our apethy to invoke it, assuming we did not want to become doners

H.

pavlovs_dog · 12 April 2006 at 12:56AM

Rachel021967 wrote:

Unfortunately, as I understand it if the next of kin are against it the organs cannot be donated even if the donor put it in writing and carried a donor card. Is there anyway around this?

i think this is wrong. if the deceased has made their views clear by signing up to the card, what right do remaining relatives have to override that? its not as if the hospitals are fighting off healthy donors :rolleyes:

EmmieHarris · 12 April 2006 at 1:23PM

Hi everyone

Thanks sooo much for your nice replies! Just to update you on the queries....unfortunately at the moment the decision to donate rests solely with the next of kin of the person who has died. Every year 40-50% of relatives refuse consent for their loved ones' organs to be donated. Often this is simply because they have no idea what their relative would have wanted...which is why we are so keen to encourage people not only to sign the Organ Donor Register but to also discuss their wishes with their loved ones, in case there ever comes a time when they have to make that heart-breakingly difficult decision. If they know what their loved one wanted, it makes it so much more likely that they will follow their wishes.

From September 2006 the law will change in Scotland to state that the deceased person's wishes should always be followed if they had made clear their wish to be a donor...and I believe similar legislation will also come into effect in England the following year. However, in practise, no doctor would ever be prepared to remove a person's organs against the explicit wishes of their family for obvious ethical reasons. So the law will not really hold much weight.

Again, the most important thing you can do if you want to be a donor after your death is to sign the register AND tell your loved ones'. The chances you could ever donate your organs is very small (you are actually more likely to need a transplant than to ever be in a position in which you could donate) but at least you then have made your wishes clear.

Anyway, thanks again for all your support guys, it means so much to us both. :T Oh and please keep visiting the website: https://www.livelifethengivelife.co.uk to find out more!

Take care
Emma xxx

rchddap1 · 12 April 2006 at 1:26PM

My details have been on the register for ages. Its something that's always felt right to me. Just because I can't use them any more it doesn't mean that someone else shouldn't benefit if possible. However, I don't carry a card....so I have made my nearest and dearest aware of my wishes should the worst happen.

Being on the register is great, but the most important part is telling your relatives what you want. Your relatives can refuse even if you are on the register.

jobbingmusician · 12 April 2006 at 3:22PM

ummmm - so why doesn't the register have a space for the NOK to approve? FAR better for them to have expressed their approval in advance than to have to decide when they have just suffered a bereavement....... And registering in advance would ensure that donors (and that should be everyone!) have discussed donating with them

Dezzie_2 · 12 April 2006 at 4:50PM

Many congratulations on your post. As a mother of two young adults, who both wish to donate their organs in the event of their death it would break my heart but I hope I would be strong enough to follow their wishes and at least we would bring a smile and some joy to someone. Can you tell me is their a limit on the age of donors? I would be more than happy to donate any of my organs if they were of any use. I hope lots of people sign up.

I want Emily to live...3 minutes of your time could save her life

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