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*Carole*
Beginner August 2007

organ donation (sens but please read)

*Carole*, 12 December, 2013 at 08:58 Posted on Off Topic Posts 0 89

I don't normally do Fb shares on forums but this is too important to not share. I have a dear friend that I met through a heart charity for children of congenital and acquired heart conditions. her little boy theo (the same age as my son) is currently an inpatient at GOSH in heart failure waiting for the gift of life. He should be at school enjoying the run up to Christmas, performing his nativity, writing Christmas lists about presents and enjoying family times. The family is spilt apart, difficult at the best times but during the Christmas period even sadder, and there is a real possibility that he may not come home. this is the status that she wrote this morning:

Sad times. A small child died yesterday while waiting for a heart. He was on milrinone like theo but had deteriorated and developed complications of heart failure. His gift didn't come in time.
Need people to realise that this is what happens. Theo is dying and the drugs are keeping him going. But his body can't and won't last indefinitely like this.
Keep spreading the word about organ donation, please.

It's a real status about a real family not a stupid FB chain letter.

89 replies

Latest activity by AmnesiaCustard, 18 December, 2013 at 15:29
  • MummyMoo82
    Beginner October 2012
    MummyMoo82 ·
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    Being an Organ donor is very important to me and we are signed up. Good to remind people of what happens if you don't do it.

    One life lost could be another life saved x

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  • *Carole*
    Beginner August 2007
    *Carole* ·
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  • kharv
    Beginner March 2012
    kharv ·
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    I really hope your friend's little boy gets his lifesaving gift soon xxx

    Organ donation is something I had to sit down and talk to my husband about a couple of years ago. He wasn't on the list and I think it was because of pure lack of knowledge and understanding on his part.

    I would never force anyone to become a donor but I do think it's so important that those that aren't, at least understand their reasons for not being. Once we had a chat my husband signed up online.

    I know it is controversial but I would definitely support an opt out system if it was implemented properly.

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  • ebony_rose
    Genius
    ebony_rose ·
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    Really hope Theo gets his gift.

    I signed both of my boys up to be donors. C is very proud of his donor card, and tells his friends about it.

    I don't think people realise how important it is.

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  • TheRealTricks
    Beginner January 2012
    TheRealTricks ·
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    My whole family are organ donors; my mum signed us up when we were very small and its something she is very passionate about which in turn she has passed on to me.

    Like Kharv, I had to explain it to my husband as he was ignorant about it, he has now signed up too.

    Carole, I hope your friend's little boy gets his gift soon.

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  • lil_2014
    Beginner July 2014
    lil_2014 ·
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    Yeap, I think Kharv words were very wise and not much I can add.

    Both OH and I are donors. I even signed up for Bone Marrow but got turned down due to other health concerns.

    Hope this will be a thing of the past soon and sending good vibes wishes to your friend's kid and anyone else going through such dark times Smiley sad

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  • Ali_G
    Beginner October 2012
    Ali_G ·
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    I'm ignorant... do they just take your organs once you're dead? Do they preserve them? Or can they take them when you're alive too?

    I'm not a donor, but I've considered it so many times.

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  • *Mini*
    Beginner January 2012
    *Mini* ·
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    That's very sad, poor little man.

    ive been on the register since I first got my driving liscence. I remeber a thread before about an opt out system as Wales are proposing to implement it. Good idea if you ask me.

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  • *J9*
    VIP March 2014
    *J9* ·
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    I'm a donor and when we have children I'll be signing them up too. It's so important, it can save someone's life and it's not like we'll need our organs when we die!

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  • Vikster79
    Beginner July 2011
    Vikster79 ·
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    That is very sad. I hope it has a happy ending.

    I am a donor but have opted out of them taking my eyes. Not sure they would want my liver though, especially not after last night!

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  • Tizzie
    Beginner June 2012
    Tizzie ·
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    I signed up when I was quite young by my own choice. It's something I believe everyone should do if they can and would fully support an opt out system. Although I have opted out of eyes. I don't know why but I'm really funny about my eyes and I hate the thought of it (and yes I'll be dead so I don't know why?!) but I redid one online for something and I'm sure I put eyes as well so who knows.

    I have had a conversation with H that if there was an accident and I was severely injured/possibly brain dead etc I want organ donation to be brought up pretty soon.

    It's the same with giving blood, I think everyone who can (health issues etc aside) should do it as it is so important. Saying that I've never been able to successfully give blood which upsets me loads.

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  • Holey
    Beginner July 2011
    Holey ·
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    I signed up when I got my first driving licence, and my H is registered too.

    I agree it's so important and I also would be in favour of an opt out system

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  • Saisi
    Beginner June 2011
    Saisi ·
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    I'm signed up and so is H. Don't know if there's a "list" for children actually but I'd donate Alex's organs in a millisecond, although obviously I hope I never have to. In such an event I would find comfort knowing he had helped other people, probably other children, to live or to see. It's something I feel very strongly about.

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  • *Teabag*
    Beginner June 2013
    *Teabag* ·
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    I am on the organ donor register and I also signed up as a bone marrow donor volunteer a few years ago. My OH on the other hand won't consider it and although I respect his decision, it really upsets me.

    One of my close friends received a new kidney this year and it has made an enormous difference to his life. To me, once I am gone I have no need for my body so if it can help others then I would gladly give my bits away!

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  • Chippet
    Beginner January 2014
    Chippet ·
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    I'm an Organ Donor and also would like an 'opt out' policy implemented.

    *Carole* I really hope you don't mind me adding this in, if you do I'm happy to delete.

    Bone Marrow/Stem Cell Donation is important too. This is something that can be done while you are still alive and in many cases only Stem Cells are required, and the process is so simple, it's not painful as many people believe (not dis-similar to taking blood) and can save the lives of many people suffering from blood cancers and disorders. Please consider signing up!

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  • Cilla
    Beginner April 2012
    Cilla ·
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    I'm on the organ donor register, and my brother, who took his own life last month, was also. One thing that helped us was to know that another life was saved because of him

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  • Arquard
    Beginner May 2011
    Arquard ·
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    We're both on the list and after L saw a blood donation poster a while ago, I explained about organ donation to him and he has said if anything ever happens to him, he would want to donate anything and everything he could.

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  • Erin8
    Beginner June 2014
    Erin8 ·
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    View quoted message

    My thoughts exactly

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  • ~Peanut~
    Beginner December 2012
    ~Peanut~ ·
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    I'm a registered organ donor and I believe it should be an opt-out system. If you're willing to accept a donated organ if needed you should be willing to donate yours.

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  • Cilla
    Beginner April 2012
    Cilla ·
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    I do think the process could do with improving though. We had 20 hours of waiting while tests were done and it felt like hurdles had to be jumped before they could only use my brothers kidneys. Long story short, several of his organs were damaged when he jumped but in order to test his suitability and compatibility they needed pre transfusion blood of which there was only about 3mls left in the lab (they'd thrown away a sample the day before) so there was a lot of worrying and waiting while they decided. Then the tissue donation centre (tissue included heart valves as well as eyes, tendons etc) required their own sample, they would not accept the results from the hospital running the tests for the organ donation. Of course, there wasn't enough blood to send them so they couldn't be harvested! In the end only his kidneys were used, when in fact really, only his lungs and liver were damaged and unusable. Seems quite a waste really

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  • *Teabag*
    Beginner June 2013
    *Teabag* ·
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    I am so sorry to hear about your brother Cilla. Sending you lots of hugs X

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  • Cilla
    Beginner April 2012
    Cilla ·
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    Thank you

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  • Jemima Renrut
    Beginner October 2013
    Jemima Renrut ·
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    Sorry to hear about your brother.

    Ive never tthought about it to be honest. Never known it to be close to home although I do donate blood when they let me.

    Do they only use them for saving other people or do they also take them for medical research and is there away of knowing or is it random?

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  • kharv
    Beginner March 2012
    kharv ·
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    I know I've said it before but I am so sorry about your brother, Cilla. I'm so pleased you we're able to find some comfort in knowing he helped save lives.

    After hearing about your experience, I agree the process should be much better than that xxxx

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  • Cilla
    Beginner April 2012
    Cilla ·
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    There was a massive list of questions which the coordinator went through regarding all this. It was very comprehensive and we could opt in or out of anything along the way. If I remember rightly, and it was all a bit blurry at the time, they only take they organs/tissue they believe will be able to be used in donation, but should anything be found to be unusable after all, it could be used in research if we gave our consent, which we did.

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  • *
    Beginner April 2014
    *PN* ·
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    I am an Intensive care nurse so have experience with organ donation.

    I am sorry to hear about your brother Cilla, not sure where abouts in the country you are, but in my unit, the process is pretty quick. A few months ago I had a patient who went for organ donation as they were brain stem dead. The family had signed consent by perhaps 4pm, then went to donate organs at about midnight, and that's purely for logistical reasons of waiting for emergency theatre suite / theatre recovery to become empty. The tests we do take no longer than a few hours as they are put through as urgent. This is pretty standard timings on our unit and have never known for someone having to wait that long. Nor have I heard about pre transfusion. Maybe your brother had a rare blood group, requiring further tests? They have to throw away cross match bloods every few days. I am so sad to hear you had such an awful experience with it all. Sending you hugs xx

    I whole heartedly agree it should be an opt out system, and 100% agree with the person who said if you are willing to accept an organ you should be willing to donate.

    Needless to say I am on the register to donate everything. And since starting this job, I encouraged OH to join the register and has done.

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  • Panjita
    Beginner May 2011
    Panjita ·
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    My friends little boy was diagnosed with a rare congenital heart defect when he was just a day old. He underwent 7 open heart surgeries (the first when he was days old) and they performed a heart transplant when he was seven years old. The operation was a success, he is thriving and he has recently won four gold medals in the Transplant games in South Africa.

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  • *gnashers*
    Beginner October 2013
    *gnashers* ·
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    Due to my Crohn's I am unable to be a doner but H is, and I would make sure any children we are lucky enough to have would be too.

    My cousin was killed when she was 17 after being hit by a car...her heart was donated to a young girl, who has gone on to lead a happy and healthy life. My auntie and uncle use that as a source of comfort, knowing that she was able to save a life.

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  • Panjita
    Beginner May 2011
    Panjita ·
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    DEFINITELY!! I think it's only the cornea they take, not the whole eye. My ex had Cornea grafts and they changed his life.

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  • Cilla
    Beginner April 2012
    Cilla ·
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    I'm very glad to find it's not always that bad. He was in Aintree in Liverpool. The decision was made at about 10am that his injuries were not recoverable, he wasn't brain stem dead though, so they spent the day keeping him optimised, and they finally removed his breathing tube at 5am the following morning. I don't think he had a rare blood group, but he had 20 units of blood during the first night and a couple more the next day so I'm guessing that there wouldn't have been much of his own left to test ha. Then the virology screen had to be run a second time (another 3 hour wait) because there were issues with the validation of the machine. Only when all the results came back could they put the organs out for offer. Then we had a wait while the surgeons came from wherever they were coming from.

    As I said though, it's good to know that's not the norm

    ETA I just remembered that the sample had to be sent across the city to the lab at the Royal Liverpool which may account for more waiting

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  • Erin8
    Beginner June 2014
    Erin8 ·
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    So sorry to hear about your brother Cilla. The father of a friend of mine got a call on her graduation day to say they had a suitable match for a kidney transplant. Everyone is so happy he got to have a transplant after 6 years on the waiting list.

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  • leni-lw!
    Beginner November 2011
    leni-lw! ·
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    The opt out system has been passed here in wales and they are hoping it will be in place 2015.. I totally belive in organ donation, what good is your organs when you've died when you can help others.. my best friends fil had a kidney trasnsplant 1st nov and is doing well all because of the organ donation scheme.. we've had this debate in work and out of 14 only 5 would be willing to do organ donation, yet they would be quick enough to accept an organ though.

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