Organ Donation

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I remember having a chat with my parents when I was about 13 saying I was in favour of organ donation. Both of them were registered and I wanted to as well. So I signed up before I was 14. I would love to give blood but I'm needle phobic, I come over all funny just knowing I've got an upcoming appointment(pre covid) for a blood test etc. But my husband has recently had a call asking if he would like to donate plasma and he's agreed to do it. Just waiting to hear back from the hospital.
 
Don’t shoot me but before it was made mandatory I opted out, I don’t know it just doesn’t feel right for me to share my organs, although in recent years I’m perhaps thinking a bit differently and might opt in. I have signed up to give blood though, I’m happy to do all the blood I can
I feel exactly the same. It just doesn’t sit right and I felt bad opting out but it’s what I wanted.
I also give blood & have no issue with that.
 
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I’ve been on the organ donation register for years. I’d rather my organs, if they’re in good enough nick, be used for something worthwhile, rather than be left in the ground to rot or cremated. It’s great that it’s now opt out in England. I think many people would happily donate their organs but never got around to actually putting themselves on the register, because it’s just one of those things you can forget to get around to. This way those who are strongly against it can opt out and those of us who are ok/neutral about it don’t have to do anything.

Giving blood is something I’m not sure I could do though. I have a fear of needles and get really squeamish and uncomfortable. I know I know it’s not really a good excuse, I just can’t pluck up the courage the thought of it makes me nauseous.
 
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I registered a while ago.

I was a heart patient as a baby so am hoping my organs can be studied, if not donated, and still help people somehow.
 
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I register years ago when I got my provisional licence. My organs are no use to me once I’m gone, so someone may as well make use of them!

when my dad passed away, he was able to donate several of his organs, and at points, thinking of those people he helped was one of the few things that got me through some of the tough days.

The organ donation nurses were absolutely wonderful, we had to wait quite a while after making the decision for the specialist surgical team to arrive, and they were there the whole time, looking after him and us.

Making the decision was easy for us, he had been on the register forever and had made enquiries about donating his body to medical science (I mean thank goodness he never got anywhere with that!), but I can’t imagine having to make that decision not knowing how he would have felt. I’d like to think people are more likely to opt out than opt in...
 
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I’ve always carried an organ donation card and am happy for mine to be used to save lives. My motto is if I’d be willing to accept and organ I should also be willing to give
This is my feelings too! I can’t get my head around accepting a donated organ and not being willing to donate my own.
 
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I’ve been an organ donor as long as I can remember. Gave blood for the first time a month back and going to make sure I carry on doing that. Wish I’d done it earlier but a bit of a baby with things like that 🤣 I’m also a bone marrow donor as my dad has leukaemia. It’s not curable but we hope he can live with it for a long time. As soon as we found out me and my sister signed up through Antony Nolan.
 
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Me again! Sorry. As an organ donation nerd and enthusiast it’s really interesting hearing everyone‘a views and opinions (and some sad experiences too, I am sorry to hear those).

To donate your organs you have to die within ICU or A&E, either on a ventilator or very soon after being taken off a ventilator - there are strict circumstances regarding how you pass away and it is all monitored extremely closely. If you are approved as an organ donor then you will have non stop attention from the ICU team until you are transferred to the operating theatre where the organ retrieval team will then take the very best care of you. For example, I’ve seen surgeons undo and redo sutures 3 times before because they aren’t happy with how neat they are. (Just wanted to share this as some people think your organs are just ripped away and that’s the end).

I’ve lost the point of what I’m saying but basically I think it was along the lines of very few people are ever in the position of being able to actually donate due to the circumstances required. So hopefully you’ll never have to rely on the decisions you’ve made - BUT it is so important to make them and share share share your wishes with your loved ones because yep, NOK has the final say!
 
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Me again! Sorry. As an organ donation nerd and enthusiast it’s really interesting hearing everyone‘a views and opinions (and some sad experiences too, I am sorry to hear those).

To donate your organs you have to die within ICU or A&E, either on a ventilator or very soon after being taken off a ventilator - there are strict circumstances regarding how you pass away and it is all monitored extremely closely. If you are approved as an organ donor then you will have non stop attention from the ICU team until you are transferred to the operating theatre where the organ retrieval team will then take the very best care of you. For example, I’ve seen surgeons undo and redo sutures 3 times before because they aren’t happy with how neat they are. (Just wanted to share this as some people think your organs are just ripped away and that’s the end).

I’ve lost the point of what I’m saying but basically I think it was along the lines of very few people are ever in the position of being able to actually donate due to the circumstances required. So hopefully you’ll never have to rely on the decisions you’ve made - BUT it is so important to make them and share share share your wishes with your loved ones because yep, NOK has the final say!
OK this prob sounds stupid but I've read that if you're an organ donor and on ventilation and someone needs an organ then they may not try so hard to save you? Is that bull? It scares me. Lol.
 
OK this prob sounds stupid but I've read that if you're an organ donor and on ventilation and someone needs an organ then they may not try so hard to save you? Is that bull? It scares me. Lol.
Ive heard a tonne of people with the same fear and I don’t think it’s stupid at all! I can’t give any insight into it I just wanted to say it’s not silly don’t feel silly for thinking that way! But I’m interested to hear any insight into this.
 
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I've been lucky enough to meet two people who have received donor hearts.
They were both so very grateful for their second chance at life.
 
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OK this prob sounds stupid but I've read that if you're an organ donor and on ventilation and someone needs an organ then they may not try so hard to save you? Is that bull? It scares me. Lol.
My dad was in ICU on a ventilator for 2.5 weeks. They operated twice on his brain during that time... I’m fairly sure they only check whether they’re a donor when the decision is made that there is nothing else they can do. It was never even mentioned to us anyway until a while after the consultant had the ‘we can’t do anything else’ conversation
 
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Someone explained the organ waiting list as being like a flow chart, rather than a linear list.it isn't always who is most deserving, it is who is compatible and who is able to actually have the operating both logistically and health wise.

We had a family friend who had lung problems and could have benefitted from a lung transplant. We live in the north east and she was under consultant care in a hospital where they carry out transplants. They had a patient going to receive a transplant as a high priority, but she was also an exact match . They asked her if she would have a transplant if the original intended recipient couldn't , to avoid wasting the organ as the window to carry out the procedure once the organ has been removed is tiny. She declined the offer.
 
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OK this prob sounds stupid but I've read that if you're an organ donor and on ventilation and someone needs an organ then they may not try so hard to save you? Is that bull? It scares me. Lol.
That is NOT a stupid question at all! But nope, not true at all.

There are so many things going on when a severely unwell person is admitted to intensive care, you don’t go “oh they are a donor - Bob upstairs needs a heart, let’s take this one!”. Here’s an example of an organ donation case:

John (he’s pretend) has a bleed on his brain. Intubated and ventilated by paramedics at the scene because he’s completely unresponsive and unable to breathe. Gets admitted to A&E. Scan shows this is a very severe injury to his brain and it is likely he will not recover, however there is emergency surgery that can be done to give him a slight chance. He is rushed to surgery. Then onto ICU. His blood pressure and ventilator requirements etc are all over the place, it takes hours and much medication to stabilise him. Finally when he is semi stable (yet still critically unwell and unlikely to survive / get to a point where he and his family will be happy with his quality of life) conversations are had about where we go from here (this could be days - a few weeks later!). He’s not making any effort to breathe for himself and he is not responding despite not being on any sedation / drugs that keep him asleep. Family say he would not want to live in a disabled or reliant state. Organ donation is not mentioned at this point at all. Family spend time with him whilst in the background we check if he is on the register. If he is then we contact the specialist organ donation nurses to approach the family and tell them that he is and ask their opinions about going forward with donation. They are not forced into this at all, and are given the opportunity to ask a million questions about the process. If he isn’t on the register then we still contact the specialist organ donation nurses to inform them that we have a patient who is heading towards the end of their life and is a candidate for donation. They then approach the family to ask their opinion - ONLY when the time is right (after they have had time to come to terms with the discussions they have had / spent time with the patient etc). If they do not want to donate, the ventilator and medication sustaining life is removed and the patient passes away with his family around him. If they do want to proceed with donation then the specialist nurses do many further specialist tests on the patient to ascertain if he can donate. The family are made aware of all of this beforehand and have to sign consent forms. The results of all the tests are then sent to a central donation hub where the patients organs are matched to people who are waiting for organs. His heart may be matched to someone in Glasgow, his lungs to someone in London and his liver to someone in Newcastle for example. It’s all anonymous and it does take up to maybe 12 hours or so to get all the tests and matches done. During this time the patient is often unstable so the team fight really hard to keep them “alive” as the organs need to be viable. So definitely not being given up on. Once all of his organs (or the ones that are usable anyway) have been matched and then accepted by the receipt, he is prepared for the operating theatre. This is a massive task in itself. The hospital receiving each organ send their own specialist surgeon and team to retrieve the organ, so many surgical teams travel to the patient for the operation. The family say goodbye to the patient, taking handprints and locks of hair etc if they wish, and then the operation is carried out with such care. The organs then travel to their destination straight away. The family of the patient are contacted the next day by the specialist nurses and for a few months afterwards. They are also offered counselling and bereavement care.

It is such a special and heartwarming process to be involved in. Yes it is incredibly sad, but seeing people act so selflessly during their very worst hours is humbling.

I hope some of that made sense and didn’t offend - upset / bore anyone. I really don’t want people being put off / I want people to know the truth.
 
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That is NOT a stupid question at all! But nope, not true at all.

There are so many things going on when a severely unwell person is admitted to intensive care, you don’t go “oh they are a donor - Bob upstairs needs a heart, let’s take this one!”. Here’s an example of an organ donation case:

John (he’s pretend) has a bleed on his brain. Intubated and ventilated by paramedics at the scene because he’s completely unresponsive and unable to breathe. Gets admitted to A&E. Scan shows this is a very severe injury to his brain and it is likely he will not recover, however there is emergency surgery that can be done to give him a slight chance. He is rushed to surgery. Then onto ICU. His blood pressure and ventilator requirements etc are all over the place, it takes hours and much medication to stabilise him. Finally when he is semi stable (yet still critically unwell and unlikely to survive / get to a point where he and his family will be happy with his quality of life) conversations are had about where we go from here (this could be days - a few weeks later!). He’s not making any effort to breathe for himself and he is not responding despite not being on any sedation / drugs that keep him asleep. Family say he would not want to live in a disabled or reliant state. Organ donation is not mentioned at this point at all. Family spend time with him whilst in the background we check if he is on the register. If he is then we contact the specialist organ donation nurses to approach the family and tell them that he is and ask their opinions about going forward with donation. They are not forced into this at all, and are given the opportunity to ask a million questions about the process. If he isn’t on the register then we still contact the specialist organ donation nurses to inform them that we have a patient who is heading towards the end of their life and is a candidate for donation. They then approach the family to ask their opinion - ONLY when the time is right (after they have had time to come to terms with the discussions they have had / spent time with the patient etc). If they do not want to donate, the ventilator and medication sustaining life is removed and the patient passes away with his family around him. If they do want to proceed with donation then the specialist nurses do many further specialist tests on the patient to ascertain if he can donate. The family are made aware of all of this beforehand and have to sign consent forms. The results of all the tests are then sent to a central donation hub where the patients organs are matched to people who are waiting for organs. His heart may be matched to someone in Glasgow, his lungs to someone in London and his liver to someone in Newcastle for example. It’s all anonymous and it does take up to maybe 12 hours or so to get all the tests and matches done. During this time the patient is often unstable so the team fight really hard to keep them “alive” as the organs need to be viable. So definitely not being given up on. Once all of his organs (or the ones that are usable anyway) have been matched and then accepted by the receipt, he is prepared for the operating theatre. This is a massive task in itself. The hospital receiving each organ send their own specialist surgeon and team to retrieve the organ, so many surgical teams travel to the patient for the operation. The family say goodbye to the patient, taking handprints and locks of hair etc if they wish, and then the operation is carried out with such care. The organs then travel to their destination straight away. The family of the patient are contacted the next day by the specialist nurses and for a few months afterwards. They are also offered counselling and bereavement care.

It is such a special and heartwarming process to be involved in. Yes it is incredibly sad, but seeing people act so selflessly during their very worst hours is humbling.

I hope some of that made sense and didn’t offend - upset / bore anyone. I really don’t want people being put off / I want people to know the truth.
That sounds harrowing but thank you for explaining. I pray to god I’m never in that situation with someone I love. Can I ask, at what point does the patient die? Is it straight after theatre? Does he die alone, can his family be with him?
 
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That is NOT a stupid question at all! But nope, not true at all.

There are so many things going on when a severely unwell person is admitted to intensive care, you don’t go “oh they are a donor - Bob upstairs needs a heart, let’s take this one!”. Here’s an example of an organ donation case:

John (he’s pretend) has a bleed on his brain. Intubated and ventilated by paramedics at the scene because he’s completely unresponsive and unable to breathe. Gets admitted to A&E. Scan shows this is a very severe injury to his brain and it is likely he will not recover, however there is emergency surgery that can be done to give him a slight chance. He is rushed to surgery. Then onto ICU. His blood pressure and ventilator requirements etc are all over the place, it takes hours and much medication to stabilise him. Finally when he is semi stable (yet still critically unwell and unlikely to survive / get to a point where he and his family will be happy with his quality of life) conversations are had about where we go from here (this could be days - a few weeks later!). He’s not making any effort to breathe for himself and he is not responding despite not being on any sedation / drugs that keep him asleep. Family say he would not want to live in a disabled or reliant state. Organ donation is not mentioned at this point at all. Family spend time with him whilst in the background we check if he is on the register. If he is then we contact the specialist organ donation nurses to approach the family and tell them that he is and ask their opinions about going forward with donation. They are not forced into this at all, and are given the opportunity to ask a million questions about the process. If he isn’t on the register then we still contact the specialist organ donation nurses to inform them that we have a patient who is heading towards the end of their life and is a candidate for donation. They then approach the family to ask their opinion - ONLY when the time is right (after they have had time to come to terms with the discussions they have had / spent time with the patient etc). If they do not want to donate, the ventilator and medication sustaining life is removed and the patient passes away with his family around him. If they do want to proceed with donation then the specialist nurses do many further specialist tests on the patient to ascertain if he can donate. The family are made aware of all of this beforehand and have to sign consent forms. The results of all the tests are then sent to a central donation hub where the patients organs are matched to people who are waiting for organs. His heart may be matched to someone in Glasgow, his lungs to someone in London and his liver to someone in Newcastle for example. It’s all anonymous and it does take up to maybe 12 hours or so to get all the tests and matches done. During this time the patient is often unstable so the team fight really hard to keep them “alive” as the organs need to be viable. So definitely not being given up on. Once all of his organs (or the ones that are usable anyway) have been matched and then accepted by the receipt, he is prepared for the operating theatre. This is a massive task in itself. The hospital receiving each organ send their own specialist surgeon and team to retrieve the organ, so many surgical teams travel to the patient for the operation. The family say goodbye to the patient, taking handprints and locks of hair etc if they wish, and then the operation is carried out with such care. The organs then travel to their destination straight away. The family of the patient are contacted the next day by the specialist nurses and for a few months afterwards. They are also offered counselling and bereavement care.

It is such a special and heartwarming process to be involved in. Yes it is incredibly sad, but seeing people act so selflessly during their very worst hours is humbling.

I hope some of that made sense and didn’t offend - upset / bore anyone. I really don’t want people being put off / I want people to know the truth.
Thank you for writing such a thorough account of what happens. I was in a very unfortunate position of battling sepsis a couple of years ago; it was touch and go and after a month in ICU (three weeks on a ventilator/trach) I survived.

As I’m sure you’re aware, when you’re in a medically induced coma you do hear all sorts of conversations, some false, others true. I’m hoping you can help me with one particular memory though. I remember quite clearly some doctors discussing the severity of my sepsis and that if I were to die, they couldn’t use my organs. Is this true or was it just delirium?
 
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I feel exactly the same. It just doesn’t sit right and I felt bad opting out but it’s what I wanted.
I also give blood & have no issue with that.
I’m always fascinated by people who don’t want to register as an organ donor. Would either of you accept an organ(s) to save your lives?. It’s totally understandable that you’d choose to opt out if your answer is no and you’d quite happily accept that your life is meant to end at whatever age it chooses to. I always think to myself if i was unlucky enough to need any kind of transplant that it’s my duty to register myself as a donor just to balance out my karma should the unthinkable happen. If I die I’m definitely not going to need the organs and it’s a beautiful legacy to leave behind. I can tell you that the recipient NEVER forgets what that selfless person chose to do to save their life.

Ive heard a tonne of people with the same fear and I don’t think it’s stupid at all! I can’t give any insight into it I just wanted to say it’s not silly don’t feel silly for thinking that way! But I’m interested to hear any insight into this.
Absolutely not, the Hippocratic oath is first “Do no harm” so unless you have a do not resuscitate order in place ICU/A&E doctors will always do everything in their power to save you. You are their patient first and foremost. The transplant team is completely separate and they are called only after consent has been provided by the next of kin. It can take some time between that consent is given and the organs are retrieved. Grieving families are given as long as they like with their deceased relative before harvesting of any kind takes place. The separation between the ICU/A&E team and the transplant team ensures there is no conflict of interest.
 
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That is NOT a stupid question at all! But nope, not true at all.

There are so many things going on when a severely unwell person is admitted to intensive care, you don’t go “oh they are a donor - Bob upstairs needs a heart, let’s take this one!”. Here’s an example of an organ donation case:

John (he’s pretend) has a bleed on his brain. Intubated and ventilated by paramedics at the scene because he’s completely unresponsive and unable to breathe. Gets admitted to A&E. Scan shows this is a very severe injury to his brain and it is likely he will not recover, however there is emergency surgery that can be done to give him a slight chance. He is rushed to surgery. Then onto ICU. His blood pressure and ventilator requirements etc are all over the place, it takes hours and much medication to stabilise him. Finally when he is semi stable (yet still critically unwell and unlikely to survive / get to a point where he and his family will be happy with his quality of life) conversations are had about where we go from here (this could be days - a few weeks later!). He’s not making any effort to breathe for himself and he is not responding despite not being on any sedation / drugs that keep him asleep. Family say he would not want to live in a disabled or reliant state. Organ donation is not mentioned at this point at all. Family spend time with him whilst in the background we check if he is on the register. If he is then we contact the specialist organ donation nurses to approach the family and tell them that he is and ask their opinions about going forward with donation. They are not forced into this at all, and are given the opportunity to ask a million questions about the process. If he isn’t on the register then we still contact the specialist organ donation nurses to inform them that we have a patient who is heading towards the end of their life and is a candidate for donation. They then approach the family to ask their opinion - ONLY when the time is right (after they have had time to come to terms with the discussions they have had / spent time with the patient etc). If they do not want to donate, the ventilator and medication sustaining life is removed and the patient passes away with his family around him. If they do want to proceed with donation then the specialist nurses do many further specialist tests on the patient to ascertain if he can donate. The family are made aware of all of this beforehand and have to sign consent forms. The results of all the tests are then sent to a central donation hub where the patients organs are matched to people who are waiting for organs. His heart may be matched to someone in Glasgow, his lungs to someone in London and his liver to someone in Newcastle for example. It’s all anonymous and it does take up to maybe 12 hours or so to get all the tests and matches done. During this time the patient is often unstable so the team fight really hard to keep them “alive” as the organs need to be viable. So definitely not being given up on. Once all of his organs (or the ones that are usable anyway) have been matched and then accepted by the receipt, he is prepared for the operating theatre. This is a massive task in itself. The hospital receiving each organ send their own specialist surgeon and team to retrieve the organ, so many surgical teams travel to the patient for the operation. The family say goodbye to the patient, taking handprints and locks of hair etc if they wish, and then the operation is carried out with such care. The organs then travel to their destination straight away. The family of the patient are contacted the next day by the specialist nurses and for a few months afterwards. They are also offered counselling and bereavement care.

It is such a special and heartwarming process to be involved in. Yes it is incredibly sad, but seeing people act so selflessly during their very worst hours is humbling.

I hope some of that made sense and didn’t offend - upset / bore anyone. I really don’t want people being put off / I want people to know the truth.
Wow. Thank you for explaining it in such detail. It has definitely opened my mind up to it more.

Thank you for writing such a thorough account of what happens. I was in a very unfortunate position of battling sepsis a couple of years ago; it was touch and go and after a month in ICU (three weeks on a ventilator/trach) I survived.

As I’m sure you’re aware, when you’re in a medically induced coma you do hear all sorts of conversations, some false, others true. I’m hoping you can help me with one particular memory though. I remember quite clearly some doctors discussing the severity of my sepsis and that if I were to die, they couldn’t use my organs. Is this true or was it just delirium?
I am sorry you went through that, it sounds really scary.

My grandad passed a few years ago after complications from surgery. Before he died, he was heavily sedated (may have been an induced coma). His medical team made my family aware that he may he able to hear what was being said so they made sure to not have any negative conversations near him. That always really haunted me... the idea he could hear but not respond and maybe felt trapped and scared. Did you feel that way??

I can't even imagine what you went through.
 
That always really haunted me... the idea he could hear but not respond and maybe felt trapped and scared. Did you feel that way??

I can't even imagine what you went through.
I heard an awful lot when I was poorly, but then again, I also went to Israel, Germany, Norway and an all inclusive cruise! I was very, very delirious so some things that happened were very whacky! That said, my mum shouted at me a few times to wake up and think of my children (she died a few years ago) and I was also ‘judged’.

I did hear a lot of things from visiting family; when I was back on the wards, we discussed it and all that I heard them speak was accurate (for example: my daughter discussing what she had eaten at a restaurant and my husband promising a holiday to our favourite place in Dorsey). Honestly, just because a person is ‘sleeping’ they are very, very aware of what is going on. There are moments of awareness but also confusion; it’s trying to decipher what was real and what was imagination.

your grandfather no doubt was aware of what you were saying at points but I don’t want you feeling haunted by that. It would have given him so much comfort just knowing someone was there. I hope you are okay 💕

eta: and yes, I remember feeling very scared and confused at points, but also accepted death too :( I do suffer with PTSD because of it but I’m getting there slowly xx
 
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