Organ Donation

[Bitofthebubbly]

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.

 

[Barbie2020]

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.

 

[Countrybumpkingirl]

I am a registered donor but only for a small number of organs due to damage from long term medical conditions. I wish I could give blood but being type 1 diabetic it will never happen sadly

 

[GetOffMyLawn]

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?

 

[Boredofthegram]

I’ve always been a registered donor. My mum had renal cancer and lost a kidney and her remaining one doesn’t function fully so she’ll likely need a transplant in the future.

 

[chocolate choux]

I was on the register before it became opt out. I didn’t see the point in my organs rotting away with me, and like others have pointed out I’d obviously take an organ if I needed to so it’s only fair

Would love to donate blood too but (1) I’m always anaemic and (2) the donation sessions are so infrequent and always fully booked up months in advance (which is good thing really!)

 

[Kim Mild]

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.

 

[Very traditional]

I'm the same with blood only I can't even bear
to have my blood pressure taken or think about blood, I get all panicked and faint. I feel so guilty for this as I would love to be able
To give blood.

Like many on this thread I had an organ donation card in my teens before the internet existed and Before I was old enough to legally be registered but I felt (and still feel) so strongly about how important it is.

Years ago I found my dads card in his wallet and asked what it was for
he told me-adding ‘I’d rather someone else had use,rather than just rotting away’
the minute I was old enough I got a card myself/signed up online/told my family to use what ever they could
my daughter asked me years later and I told her what her grandad had told me so she signed up and I’m proud to say all mine have too,one by one
id be happy to take an organ if I had to so I have to be happy to give too

only thing that scares me is giving blood-I’m scared of needles and blood

i could swallow it back over the needle but it’s seeing the blood that puts me right off

im told I can ask not to see it tho so am going to look into it

 

[ChampagneBox]

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

 

[Youre a wizard Harry]

Yes I’ve been on it since I was around 14, I remember my mum telling me about it and I signed up, it never crossed my mind not to. On the bone marrow register too

 

[Gembo]

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?

 

[Practically Perfect]

i doubt they will want mine so i want to go to the Body Farm so they can use me to catch serial killers!

Dont forget to donate blood!

 

[NightCircus]

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.

 

[hrh89]

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 bullshit? 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.

 

[Ali88]

Yes I’ve been on the list after I worked as a renal dialysis nurse 10 years ago.

 

[hrh89]

Always been on the organ donation list for as long as I can remember. I could never not be. I don’t understand people that won’t do it but would obviously accept help if it came to it. Didn’t they make it the law that you now have to remove yourself from the list rather than sign up? I think that’s a better way to do it.

 

[spacebake]

I was fortunate enough to be part of the organ retrieval process at work I still feel very privileged to have been part of the patients final journey and it was a beautiful death , because this patient gave the gift of life from it. I still remember that persons name . I’ve been on the donation list since I passed my driving test but seeing it first hand , the care of our team doing the retrieval and the incredible benefit from it really cemented my belief that it’s the right decision

I do however also think it’s ok for people to not want to donate - I think people don’t like to be faced with their own mortality and the inevitability of their death? I think the more discussion , awareness and normalising of it could potentially change this mindset though , more support and conversation of the process should be in place maybe ?

 

[mcfeez]

I signed up years ago but have since changed my mind but don't know how to opt out. I changed my mind when I heard that anyone can receive donated organs such as killers

This is an odd train of thought. Where does the line get drawn in terms of who "deserves" an organ?

Your decision would also mean lots of regular good people, the more likely recipients, are being denied the chance to receive healthy organs.

 

[Lollypad]

I have opted out. I would never say I’ll never go back on the register but I had a very bad experience when a family member was on life support when I was 18. At one of the hardest moments of our lives we had the transplant team trying to pressure us in to donating a family members organs, even though that had made their views extremely clear only 6 weeks prior to the accident. I’m not discrediting the amazing work they do, I just can’t get the experience out of my head.

I’m so sorry that happened to you.

 

[JoeBloggs]

I signed up years ago but have since changed my mind but don't know how to opt out. I changed my mind when I heard that anyone can receive donated organs such as killers

I think the likelihood of that happening is very small, you'd rather not give any organ for the small chance it may go to someone who has killed. Not to sound harsh, but you are dead anyway when they take your organs why would it matter who they go to. I suspect about 99% of the time they go to a 'non killer'. To me that is very sad that you would rather not save someone just incase in the very tiny chance it might go to a murderer. What if a child needed your heart? Out of curiosity, do you donate blood and if you needed an organ, would you take it despite not being prepared to give yourself?

I opted in as soon as I could, very glad its opt out only now.