Organ Donation

[SarahGard83]

My beautiful little sister passed away very suddenly back in 2006. She was just 19 years old and decided when she was 12 that she wanted to carry an organ donation card. Both my parents were on the register so they signed her up as well. In her death my sister saved the lives of 4 people one of which was a 3 day old baby girl. We've been able to meet with the lady that received one of her kidneys and have formed a lovely friendship with her.

 

[hrh89]

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.

 

[bunnyboo]

I don't usually like the thoughts of organ donation. I mean I understand how important it is, how it could save someone's life etc. I donated blood for the first time 2 weeks ago, and will be doing it again next month. But I think my problem with organ donation is deep rooted.

I experienced major loss as a child (my baby brothers passed away), and we later found out that their organs had been removed and retained by the hospitals without my parent's knowledge/consent. The organ retention of mainly for financial gain, not for transplant purposes and when their little bodies were exhumed, we found the bodies bulked up with newspaper!! It was all part of a major scandal at the time.

When I found out as a teenager about what had happened to my brothers, I felt violated and upset and confused. The lack of respect demonstrated to the dead babies has never left me, I even get upset thinking about it now. For this reason, I feel extremely strongly that it should always be an opt-in system. Taking organs without informed consent is unethical.

Whether it's right or wrong, I will not consent to having my organs taken from me when I die.

 

[super grateful]

Yes! Organ donation is something I am very passionate about and an area I want to further my career in / educate people about.

I am a nurse in a neurosciences intensive care unit so unfortunately care for many patients who end up donating their organs. It really does bring a lot of families closure and comfort - I can advocate for this myself as my parents donated my brother’s organs when he passed away at the age of 7. Every year we celebrate him knowing that he did a wonderful thing in the final hours of his life and gave multiple families an unbelievable gift.

The specialist organ donation nurses I work alongside are absolutely fantastic and are so kind, knowledgable and specialised - they organise everything when it comes to donating. Families really are not under any stress or pressure beyond deciding “yes or no”and the professionals run numerous tests to decide what organs can and cannot be donated. You would be surprised what can be donated even after some people’s past medical history - every individual is different and it is a very thorough process.

Also despite it becoming ”mandatory”, it never actually will be. The NHS will never enforce that, they can’t risk being seen to have “stolen organs from a family’s loved one” etc so even if you’re worried about not opting out etc don’t worry, nothing will ever be forced. It’ll never be an inhumane system and will still require next of kin’s consent.

 

[SavvyBee]

I’ve been on the organ donation register since I was 18, I used to be for everything apart from my corneas but have changed that in recent years and now happy for any useful parts to go to someone in need. I fully support the opt-out system but do feel it should have been / should be better publicised - not that I want to encourage people to opt out but I do feel it slipped in fairly under the radar and I feel people really should have a choice and save a lot of upset / family fall outs should something happen.

 

[super grateful]

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!

 

[super grateful]

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.

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.

 

[Gym&Tonic]

I know a teenage girl who is waiting on an organ donation and who’s quality of life is getting worse all the time, especially now because of COVID. She’s not left her home since March. So yes, I would happily donate my organs. Its been opt out for a few years here in Wales.

 

[Bizziebody]

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.

 

[Unagi]

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

Your body and your decision. You have your reasons and people should respect that.

 

[hnoz]

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 guess the question is would you take an organ donation if it saved your life? In almost all cases the answer is yes.
If people opt of taking and donating for whatever reason, usually religious, then fair enough but often people opt out without thinking of both sides of the coin.

 

[Channy86]

When I was 17 I became unwell,went to my GP who said I had flu ,I collapsed at home , went to hospital , hot given 12hours to live as it was kidney failure ,I obvs pulled thru and started dialysis , I gotta transplant 6months later (a 3yr old died ) fast forward 10years, and I became pregnant after being told I wouldn't /couldn't conceive . My daughter was born at 30weeks. Weighing 2lb. She was in hospital 6weeks,the day before she was allowed home my transplant failed. Iv been on dialysis 6.5 years ,but struggling to get a transplant as iv had a previous transplant,had a c section and had a baby, and blood transfusions ,which has caused me to have lots of anti bodies that would reject my new kidney. I hate dialysis so much. Traumatic but keeps me Alive. Has any body been through similar.sorry for long post .xx

 

[Bitofthebubbly]

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

How many people needing organs are murderers? Not many I’d imagine.

 

[Fizzwhizz2020]

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

 

[Chuck1978]

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

The organ donation people wouldn’t know someone is a killer unless they’d been convicted and in which case they’d be in prison. In any case doctors treat convicted murderers every day for cancer, heart disease, Alzheimer’s and any number of other medical issues so they still have the obligation of “Do no harm” under their oath. Again the chances of this are so slim that you’re denying the majority of decent people the chance at a new life because of the less than 1% chance it could go to a murderer/rapist whatever. The needs of the many should outweigh the needs of the few in my opinion and if you’ve seen the difference transplantation can make up close and personal then it’s a risk 100% worth taking. Maybe you have other reasons for changing your mind though.

 

[BettyCrocker]

I’ve been a registered organ donor since I was 18 and would be more than happy to donate whatever can be used to help others in the event of my death. No point in it being buried or burnt with me if it can save someone else’s life.

 

[hrh89]

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 a strange view to say the least...

 

[Mrs Cucumber]

I've been a registered organ donor since I got my driving licence and am currently researching how to donate my eggs.

@SarahGard83 sorry for the loss of your sister, I think it's wonderful your family have a relationship with the lucky lady though xx

 

[Giggling Squid]

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?

I don’t know if it’s always the case, but we were with my dad right into the anaesthetic room before he went into surgery when they turned the machines keeping him alive off. We were with him at the end.

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 this, it’s funny - I couldn’t have told you that this is how it works, but having read your post, it’s all come flooding back, especially how kind and caring the donation nurses were. I’m assuming it’s a fairly common scenario, as this is exactly how we lost my dad.

 

[Chuck1978]

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.