Organ Donation

[toffeejelly]

I have just read a wee story about a young girl with Leukemia who has just weeks to find a suitable bone marrow donation and it got me thinking about organ donation.

Have you signed up to donate your organs or is it something you would consider? I know it is now mandatory now in England unless you opt out but it's not mandatory in Scotland until March 2021.

I would love to become a bone marrow donor but I can't because of my Colitis

 

[Hello Kitty]

I have Crohn's and have weekly immunosuppressant injections and have had blood transfusions in the past so I defintely cannot give blood. I would have no problem donating organs but I'm not sure if I can.

 

[Gembo]

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.

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.

I’m really sorry for your loss. It sounds like your dad will have been treated with a great amount of care and respect and I hope his organs have gone on to help others. I’m glad the nurses were kind to you xx

 

[Piff paff puff]

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

 

[Bubblesdahling]

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.

 

[SunshineDreamer]

I’m so sorry that happened to you.

Thank you

 

[Channy86]

My dad has been a dialysis patient for many years.
He says loads at the hospital moan about dialysis but, the way he deals with it is to accept that he has to dialyse for 3 days each week in order to live the other 4. I think that’s such a positive way to look at it.

You are much, much younger than him so it must be very hard for you, especially in the current climate. Are you having to shield?

Yes I have to shield, hard though as I have a 6yr old, who mixes with her class, the teachers say she should be at school as guidelines state.xx

 

[ClockworkDolly]

I am on the Organ Donor register. I am not going to need them when I'm dead, but someone else will.

 

[openbook1]

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 bullshit? It scares me. Lol.

 

[50sGirl]

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

My dad has been a dialysis patient for many years.
He says loads at the hospital moan about dialysis but, the way he deals with it is to accept that he has to dialyse for 3 days each week in order to live the other 4. I think that’s such a positive way to look at it.

You are much, much younger than him so it must be very hard for you, especially in the current climate. Are you having to shield?

 

[Kim Mild]

I'm not sure how I feel about it to be honest . I suppose I'll be dead so it won't matter to me if they take my organs.
I can't donate blood due to a previous transfusion

I had a long reply typed and my phone deleted it.

 

[openbook1]

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.

That is my fear.

 

[521418]

I've always been a donor, my parents are anxious about it and have a fear that they won't try as hard to save you if your organs are wanted. It's worth reading up on who can donate, even as a donor, you have to pass in fairly particular circumstances to be able to and that limits the numbers of donors even further.

 

[Piff paff puff]

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.

I know the chances are small hence why I haven't made any effort yet to reverse my decision and of course I want to help someone in need but just not a criminal who has intentionally hurt an innocent person and I wish the law was such that they didn't receive donated organs.

 

[Medusah80]

I would consider donating my organs.Tried to donate my eggs two years ago as there is not a lot of black egg donors sadly I couldn’t go ahead because of low amh .

 

[ClockworkDolly]

I signed up some years ago to have my organs donated.

 

[Piff paff puff]

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

True but the thought of it ever happening changed my mind

this is a strange view to say the least...

Strange that you don't want your organs that you are giving voluntarily to go someone that could have killed someone, a child even? Strange that you think that's strange

 

[jazyblu]

True but the thought of it ever happening changed my mind


Strange that you don't want your organs that you are giving voluntarily to go someone that could have killed someone, a child even? Strange that you think that's strange

Strange that you would refuse someone a life saving organ, possibly a child to yours your own example, on the 0.00005% chance that the person had been a murderer.

 

[101d]

I opted in many moons ago now. Also registered to donate bone marrow if ever needed.

Aren't they making organ donation mandatory now?

 

[openbook1]

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.