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  • FIRST POST
    EmmieHarris
    I want Emily to live...3 minutes of your time could save her life
    • #1
    • 11th Apr 06, 9:49 PM
    I want Emily to live...3 minutes of your time could save her life 11th Apr 06 at 9:49 PM
    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:

    www.livelifethengivelife.co.uk (registered charity no. 1095611)

    Thank you very much for reading this message:smilie:
    Organ donation - please think about it

    www.livelifethengivelife.co.uk (Charity no. 1095611)
Page 1
    • jobbingmusician
    • By jobbingmusician 11th Apr 06, 10:13 PM
    • 19,651 Posts
    • 20,477 Thanks
    jobbingmusician
    • #2
    • 11th Apr 06, 10:13 PM
    • #2
    • 11th Apr 06, 10:13 PM
    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

    What do other people think?
    • pavlovs_dog
    • By pavlovs_dog 11th Apr 06, 10:29 PM
    • 9,831 Posts
    • 24,106 Thanks
    pavlovs_dog
    • #3
    • 11th Apr 06, 10:29 PM
    • #3
    • 11th Apr 06, 10:29 PM
    certainly sounds like a good idea
    know thyself

    Nid wy'n gofyn bywyd moethus...
    • HugoSP
    • By HugoSP 11th Apr 06, 11:01 PM
    • 2,415 Posts
    • 1,450 Thanks
    HugoSP
    • #4
    • 11th Apr 06, 11:01 PM
    • #4
    • 11th Apr 06, 11:01 PM
    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
    • #5
    • 11th Apr 06, 11:05 PM
    • #5
    • 11th Apr 06, 11:05 PM
    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
    • By HugoSP 11th Apr 06, 11:16 PM
    • 2,415 Posts
    • 1,450 Thanks
    HugoSP
    • #6
    • 11th Apr 06, 11:16 PM
    • #6
    • 11th Apr 06, 11:16 PM
    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
    • By pavlovs_dog 11th Apr 06, 11:56 PM
    • 9,831 Posts
    • 24,106 Thanks
    pavlovs_dog
    • #7
    • 11th Apr 06, 11:56 PM
    • #7
    • 11th Apr 06, 11:56 PM
    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?
    by Rachel021967
    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:
    know thyself

    Nid wy'n gofyn bywyd moethus...
  • EmmieHarris
    • #8
    • 12th Apr 06, 12:23 PM
    • #8
    • 12th Apr 06, 12:23 PM
    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. Oh and please keep visiting the website: www.livelifethengivelife.co.uk to find out more!

    Take care
    Emma xxx
    Last edited by EmmieHarris; 12-04-2006 at 12:29 PM.
    Organ donation - please think about it

    www.livelifethengivelife.co.uk (Charity no. 1095611)
  • rchddap1
    • #9
    • 12th Apr 06, 12:26 PM
    • #9
    • 12th Apr 06, 12:26 PM
    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.
    Baby Year 1: Oh dear...on the move

    Lily contracted Strep B Meningitis Dec 2006 Now seemingly a normal little monster.
    Love to my two angels that I will never forget.
    • jobbingmusician
    • By jobbingmusician 12th Apr 06, 2:22 PM
    • 19,651 Posts
    • 20,477 Thanks
    jobbingmusician
    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
    I'm the Board Guide on the Matched Betting; Referrers and Jobseeking & Training boards. I'm a volunteer to help the boards run smoothly, and I can move and merge posts there. Board guides are not moderators and don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com.

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  • Dezzie
    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.
  • Bun
    I agree. One of my friends had a successful kidney and pancreas transplant a couple of years ago. I have been on the register. Luckily all my next of kin are aware of and agree with my wishes, but I do not see any reason why/how they can overturn my decision.Quite frankly it is none of their business to override my own wishes. I would also like to register my 2yr old son , but am unable to. If the unthinkable happens I would like everything possible to be done to help others, but it appears I can only do this at the time. Pity if god forbid anything happens to all of us at once.

    Keep up the good work! Good luck to your friend Emily, it does happen!
    Annabeth Charlotte arrived on 7th February 2008, 2.5 weeks early
    • Poppycat
    • By Poppycat 12th Apr 06, 4:15 PM
    • 12,645 Posts
    • 9,571 Thanks
    Poppycat
    Emmie you probably no I added donor to my system a while back. I add a link to this post to remind people like your friend and many other countless unfortunate people who need a donor urgently.

  • grex9101
    the word is that doctors will not try as hard to resusctitate a critical patient if they're an organ donor, they see the patient's death as benefitting someone else.

    Don't flame me, this is just what i have heard (from a number of sources)
    The word is BOUGHT, not BROUGHT.
    It's LOSE, NOT LOOSE.
    You ask for ADVICE not ADVISE.
  • EmmieHarris
    Hiya Gregx

    I wanted to respond to your concern as it is one of many common fears relating to organ donation. When we were building the Live Life Then Give Life website (www.livelifethengivelife.co.uk) we decided to have a section that addressed such fears and concerns and it was my task to carefully research all these issues and find out the answers to them.

    The concern about the medical team not trying as hard to save the lives of people who are registered organ donors is a common one but I can assure you that it is based on myth alone. The following website explains why the medical team caring for you will always put your life as a priority and about the fact that the team caring for you would be totally separate from any transplant team:

    http://www.bbc.co.uk/health/donation/flashjourney_index3.shtml

    On the above website you can watch an audio-visual interview with Dr Martin Smith, a consultant in Neurocritical Care who explains why there is no risk of the medical team doing anything less than 100% to save the life of a patient. He makes the point that the Intensive Care team looking after a patient do not even know whether or not that patient has chosen to be an organ donor at any stage during the time they are trying to save your life.

    Only after someone has been pronounced dead, would the matter of transplantation be investigated. A completely separate medical team would then take over, if your relatives decided that they wished to give consent for the matter to be taken further.

    I hope that helps to allay your concerns. As I say, more answers to questions and concerns can be found on our website (as well as links to find out further information about common fears).

    Take care
    Emma x
    Organ donation - please think about it

    www.livelifethengivelife.co.uk (Charity no. 1095611)
  • EmmieHarris
    Hi Dezzie
    Thank you for your kind comments! There is no age limit for being an organ donor. The oldest donor of organs so far was an 82-year old and the oldest cornea donor was 101 years old (the cornea is a small disc of cells in the eye that when donated, allows a visually impaired person to see again). Hope that helps!
    Emma x
    Organ donation - please think about it

    www.livelifethengivelife.co.uk (Charity no. 1095611)
  • bulchy
    I'm on the register, but unfortunately my daughter doesnt agree with this. Shes only 15 so I'm hoping as she gets older and wiser, she will have a change of heart. My OH and son are both aware, and dont have a problem with this. I just hope if anything was to happen to me, it wouldnt cause any arguments between them all. Will be showing her this thread and all the links, to hopefully help her to see its the right thing to do.
    Sue
  • skint-78
    This thread is great! Its interesting to read about money savers opinions on this. It seems a good random cross section.

    Thanks Emma for posting this, on behalf of your friend Emily, and yourself. To Emily, I would just say that I hope that a suitable match is found, and that you draw on the support of your friends and family at low times. To Emma, good on you for raising the profile of organ donation!
    Also you must have been spurred on by the memory of the friends that you have sadly lost, whilst they waited for a transplant.
    I also have a number friends who have lived short lives whilst waiting for transplants that have sadly not materialised.

    I know how important organ donation is from a few perspectives.

    Firstly I was reassured, when I lost my Gran at 83 years old, that some good could come from her death. Although she was unable to donate organs, she did donate her corneas. She would have been over the moon, I am sure, to know that her wishes had been carried out. I think she had probably imagined that "by her age", it would be too late for her wishes to be carried out. Maybe her card was just collecting dust in the back of her purse. I don't know, but I am glad that as a family we fully supported her wishes.

    From a different perspective, I have watched my brother and dad wait on the kidney transplant list, so that put things into perspective for me. They did both receive sucessful transplants due to the kindness of 2 strangers in this country. I always think that it was also down to the support of these peoples wishes by their nearest and dearest, at a time that they were consumed with their own grief. I think this is an amazing act.

    I had always carried the card from the earliest opportunity possible...I think I first got one when I was about 6 when my Dad was poorly when I decided i was going to take the world on, and sort it out! Obviously I didn't! At that time, I thought that I could do it single handedly!

    Then at 21 my kidneys also failed, and having waited on the transplant waiting list for 3 and a half years, I had my transplant a year ago.
    There were times at first that I thought that the transplant would be round the corner, and then as time went on, and I became increasingly ill, and I saw friends deteriorate and pass away, there were times that I lost hope. I am glad that I hung on in there.
    I realise that I was exceedingly lucky, and that sadly this is not the norm for people waiting for a transplant.

    I would urge people to give it alot of thought. Serious thought. If you decide that you want to donate your organs, I think you have to be certain so that your family see how strongly you believe in your pledge. This way, it may assist them in making the final decision at a time of grief (As the reality is that most donors die in tragic circumstances).

    I have had friends say to me that they would carry a donor card, but daren't, others who will carry a card, but wouldn't allow their partner's heart to be donated because it "belongs" to them. Others are on the organ donor register with no reservations.
    It is obviously a very emotional subject.

    I hope in my life time I will see the law change, and that the decision will be made that people will need to opt out of organ donation, as opposed to opting in. I think I read that this was rejected quite recently.
  • EmmieHarris
    Hiya Skint
    What an emotional rollercoaster it sounds like your entire family has been on over the last few years I am so pleased to hear that you, your Dad and brother have all successfully received kidney transplants. I know from watching friends who have been on the list what a confusing and stressful time it is...waiting and waiting and all the time your health deteriorating, whilst knowing that there is such a high chance that the transplant won't come in time.
    It's great to hear your Granny gave sight to two other people also by donating her corneas (not the eyes themselves in case anyone is freaked out by the concept..it's a small part of the eye!) What a lasting memory to leave behind!
    Take care and wishing all the best for excellent health in the future!
    Emma x
    Organ donation - please think about it

    www.livelifethengivelife.co.uk (Charity no. 1095611)
  • skint-78
    I think rather than anything else it makes you appreciate life, and willing to give to others...even if its half your sarnie at work cos someone forgot theirs!
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