So the role of the family in organ donation is to support their loved one’s decision to be an organ donor.

And that is all the more comforting and easier for them if their loved one is registered. A decision on the organ donor register. Under the new legislation, families play a really key part.

If their loved one hasn’t opted out or raised an objection to be an organ donor, they’re considered willing to want to help save the lives of other people.

Families are really helpful to the specialist nurses at this considerably difficult time.

Only a tiny percent of the population ever die in circumstances that they could be an organ donor. 1% of the population of all deaths only die in intensive care. So this is a rare and unique, position that they find themselves in.

Not many families have that option when somebody dies to help save the lives of others.

Of course, that is coupled at a really deeply emotional and shocked time in their lives, and we really need the families to be supportive of that decision to help us with the information that we need to gather, to make sure that donation is as safe as possible for those recipients waiting for a transplant.

Your family are an integral part of organ donation. Organ donation isn’t able to go ahead without the people that are closest to you, be that family and friends. You have the key information about yourself after you’ve died. Your family are integral in telling us about not only your medical history, but also your social history, your lifestyle, and things that are important to you for organ donations.

Go ahead. Since the law has changed, it is incredibly important that your family are able to support your organ donation decision. The law has changed, which means it has taken that burden of making an organ donation decision of your family. We all want transplantation to be as safe as possible, and when you join the open donor Register, you do so with the intention of saving as many people’s lives as possible.

In order for that to happen, your family are truly key to giving us all of the information. They’re the people that know you best. Part of the organ donation process is that we will go through all of your past medical history and any medications or any tests that you may have had in your lifetime.

However, your family and friends are the most important people who know about your lifestyle, about the things that you are interested in, any concerns you may have had with your medical history or your lifestyle since, since they’ve known you.

They are an integral part of the process. For organ donation to happen you have to die in very specific circumstances within an intensive care unit.

Often it’s led to something extremely traumatic for your family. They’re in the depths of grief. They’re often very scared about what’s happened to you, and dealing with the fact that sadly, somebody is going to pass away who they love very dearly.

It’s so important to help take the burden off your relatives and your families and your loved ones by sharing your organ donation decision and telling your loved ones what you would’ve wanted, what your wishes are, and allowing them to be empowered to support that decision when they’re facing the most incredible saddest of circumstances.

Nobody wants to think about dying or what might happen to us after we die. However, giving your family the empowerment to know that you wish to leave a legacy and to save the lives of other people can be an incredibly enlightening and turn that situation that’s extremely tragic and sad into something really positive.

It allows everybody to come together collaboratively. It allows me as a specialist nurse to try and take some of the burden off your family, but also empower them to get included and tell us all about you and all about everything that you would’ve wanted, and help support your organ donation decision to save the lives of others.

The law’s changed. It’s now the role of the family to support the decision of their loved ones. They’re important. They’re an essential part of, of the process to make sure that organ donation, if it can happen, it can happen safely.

So we need to, to work, um, with families to gather as much information as possible. This happens at an incredibly stressful time. What we want to do is take the burden off of them to support them through this sad time. And when they’re dealing with grief and the loss of a loved one, in order to donate your organs, you will have to die in an intensive care.

This is a rare and unfamiliar environment, so it’s important for us to be able to provide the necessary support that’s required from your family.

It’s really important to take the pressure off of families. When we go through, when we initiate the process of organ donation, that’s why it’s so important to to let them know of your decision. So, so this isn’t new news to them. And we can work together to ensure as little stress and the pressure is taken off them as possible at this sad time.

So in my experience as an organ donation nurse, families are absolutely integral to the work that we do.

And as part of the organ donation process, as well as the family being asked to support an organ donation decision, families do have to answer questions about, that patient’s medical history and to give us and to sign posters, um, to potentially other services that might have access so that we can assess if that patient is gonna be a safe organ donor or not.

The families often times do find it very challenging. We need to remember that these families are going to be in the acute bereavement stages and are gonna have a lot of emotions.

They’re gonna be on an intensive care unit that probably never been on before, and it’s my role to support that family through that journey.

And, if I may, the families are the best part of this job, in my opinion.

I’m just absolutely in awe of our donor families and their bravery and how wonderful they all are.

Being in ICU was a weird experience.

It was like it was noisy, all full of machines around every bed, every bed and nurses up and down in Crocs, you know, making noises on the floor all the time.

But, you know, every bed was screened off, and she looked cared for. Her hair was all arranged nicely, and she looked cared for, and she looked loved by them.

Although, I’m sure you know, she was just one of hundreds and thousands that they deal with. But this certainly made me feel like Susan was special at that time, you know?

So yeah, in a way it was all okay.

And I remember after the funeral, which it, it took me two days before I thought, oh my God, I’ve got to organise a funeral. Never thought about funerals, you know, my mind was just taking up with, with doing all this and letting people know, letting all their friends know.

But the, the humanist that did our service turned out to be the father of, I don’t know what his title would be, but the person that was in charge of ICU.

So he said, what was your experience? So I told him, and he said, oh, I’m really glad it was a good experience. I said, it was, and he said, oh, I’ll tell him.

He says, I ask everybody ‘were you ICU?’ and I feed it back.

I said, oh, you’re doing a good job.

So I said, strangely enough, after funeral, I said I’ve really enjoyed it.

I’ve enjoyed that funeral. If she had to end. And for Susan, it was, there was gonna be an ending, whether that was by suicide or whether it was what happened.

It’s all been quite beautiful.

And it was, it was. There was nothing… alright, she died, but that’s separate to it. Everything else was, was nice.

So it, it kind of the, when Gareth got really ill, it was just one night and it was like, oh really?

Well, it wasn’t out the blue. He had not been, he’d had a really bad headache for quite a while, and then it just got really poorly one night.

And, rushed in hospital, anyway, through various conversations at the hospital that obviously said he was having this brain, got a blood clot in his brain.

So, then they said he was going for emergency surgery and that I would get a phone call, just to let us know how he was.

Anyway, the phone call was to say unfortunately, he hadn’t made it through the operation and he wasn’t gonna survive, but we could go and see him, and so he was in, initially he was in like the recovery room of the operating theater.

So quite a lot of the family went, um, to see him and my sons as well. And, yeah, it was, it, it was awful to be honest. Because it was just obviously on a ventilator and in this room and all like attached to all the wires and everything. And obviously my boys and, you know, absolutely devastated as was I and Gary’s parents and his sister.

So, you know, we just spent a bit of time talking to the doctors and what had happened. And anyway, they said they were waiting for him to go to intensive care and so then the next day they said, you know, obviously it was in intensive care. And that was, um, that’s, yeah, it was quite harrowing really, because the, when you see somebody in intensive care, they kind of look just like they’re asleep really.

And you kind of think, oh, well, you know, is there a chance he is gonna recover? And although they did say it, you know, it’s not, he’s not gonna recover. But it was just, yeah, it’s, and there’s obviously other people around which are very, who are very poorly. So that’s another sort of traumatic thing to obviously your loved one, but there’s also other people in there that are very ill.

But he, yeah, it was just, it is all the machines and obviously he had, because he’d had a brain operation, he had other big like scar on his head and he had like staples in his head and it was just quite… Yeah, it was horrific, really.

But you’re just in a state of shock really when you, you know, you’re gonna see somebody in a hospital and they’re there and you just think, oh, it’s just, it’s just awful. And you’re trying to sort of process what’s going on and what’s happened and yeah, it’s just, you know, all I did was I talked to him because they said, I said, we’ll be able to hear what I’m saying, and they said, yeah, that you might apparently last thing to go, I think somebody’s here.

So I just talked to him and I just said, no, don’t worry, I’ll look. You know, me and the boys will be all right. And, yeah, just talked to him and so I told him I loved him and, and, so yeah, it was a really, a very, very awful time.

But then obviously we started talking about the organ donation as well, and that sort of followed on from that. But probably didn’t remember, don’t remember a lot about what, or I’ve tried to blank it out because it was, you know, I was in shock greatly.

And obviously I’d got my boys, you know, I had to think about not just myself and just them coming to, to terms with what happened to their dad and they were, you know, it was a lot for them to take, you know, to really understand.

And yeah, that was it. Intensive care is, it’s, not a nice place to see your loved one at all.

I don’t know.

Because I can’t say we had like a bad experience, you know what I mean?

In some ways I sat the left and I think like the NHS don’t too bloody much ’cause it went on for a week.

It was like a week of hell of watching someone f*****g brain dead when you could’ve just gone like that with an evening.

Nobody wasn’t coming back.

I mean, I get why they can’t and all the rest of it.

But they were nice. All the staff were nice and know loads of nurses by personally.

So like someone a new worked in the intensive care used to do someone.

So I don’t think he was like ever like left or like mistreated.

Do you know what I mean? He has enough like eyes out there and people to advise on like what was gonna happen.

And the young dad, that young male nurse, he was, he was lovely.

Like he was happy to answer the questions and, um, yeah, I mean he did make a point to saying Your dad has been on this register.

Like this is what he wanted.

He made sure he knew that, but I knew that anyway.

So not, not was a shock but us, you know.

We were also given the opportunity and one of the team came to speak to us.

I think quite early on, on the Wednesday, to ask if we wanted to create a playlist that they would play when Annie was in surgery.

So if we’d have got to the point where there were organs that were being donated, you know, obviously it’s not a surgery, like a regular surgery is.

So we were, Tom and I were tasked with curating the playlist.

Now Anna had a very eclectic taste in music.

And what happens when you’re experiencing a weird grief like that is every single idea that, you know, falls out of your brain.

And Tom and I are like scrambling around trying to think after like the first, after the, like obvious four we are like, what songs would she want on this playlist?

But knowing it was things like that, knowing that, like mom said, it wouldn’t be a kind of a cold clinical experience, that the doctors that would’ve been, you know, kind of taken her organs would’ve kind of got a piece of Annie kind of in there and, and kind of almost got to know who she was by this god awful playlist that we put together, you know, from like meatloaf to McFly to Westlife to, you know, Blondie Bon Jovi to Bon Jovi, um, to Harry style.

So like, things like that are weirdly comforting in times of the unknown and great sadness.

And like mom says, like that clinical environment, of course it, you know, it is never nice to, to think about the person you love in any situation where they’re, you know, no longer here.

But knowing that you are, you have the opportunity to give somebody else a gift, but also at that time that your loved one has been thought about.

And, yeah, just kind of cared for, be it through a playlist, be it through the surgeon coming to speak to you or whatever it might be.

All those little things add up to make the memory of that time not as awful as it could be, I think.

And so I think, you know, for families who are hesitant to, to do it or unsure things, like knowing that you have a team that check in on you hourly knowing that you can, you know, put together a playlist for your loved one that you then have and you can listen to it or you cannot listen to it.

But knowing that they have that on their last little journey, you know, when they’re kind of, you know, giving people the gift of life because that’s effectively what you are doing.

If you are donating organs, you are allowing somebody else to carry on living, be it for a short amount of time. And there will be people who, who get those organs who have been waiting for months or years, and you’ve got mums and dads and sisters and brothers, you know, and, and the individual themselves who are holding on for that phone call.

And if you can be the person that makes that phone call and your experience can be made easier by little things like a playlist, that goes a very long way.

So I think, you know, obviously we don’t look back on that time with fond memories, but they’re softened by things like knowing that the, the surgeon would have to listen to Bonjovi living on a prayer while, you know, while, while removing, while removing her heart, for example.

I think, I think what, what is, what is what is hard about when you are sitting in intensive care next to somebody on a life support machine and they are warm to touch and they are breathing and their heart’s beating, and you can see all that on the monitors because they obviously have to keep them optimum and they do.

Because you’ve got saline going, you’ve got all these drips, all these wires for sound.

So it’s very hard to think that actually the person lying there isn’t there because they are there, but, well, it is, they’re not there.

But it, it, it is very hard as a mother, it’s quite hard to see your daughter lying there. And you think that, yeah. I mean, I remember her, thinking, oh, she’s, she’s moved, her hand’s moved, but it was just, it was by Paul holding her hand.

But if you give, you get that and you just think, well, maybe if it is, maybe she can breathe on her own. Maybe they can do that.

And she did play games with this Leah because it, when we left her for the last time, our WhatsApp group is called, where Are My Keys? Because we all had a little lie down with Anna to say goodbye. Tom laid down with her, got up, and we got to the door outta intensive care and he said, where are my keys? And they were wrapped up in Anna’s gown

She was lying on them Yeah.

In a pajamas. Yeah.

And we struggle to understand how they could have got out of his pocket under Anna, but there’s only one Well, we know, we know how it happened.

Yeah. It’s just a way of saying, But it’s, it’s just remember, I don’t think people realise that as soon as you switch that machine off, it’s, it’s not hours, it’s not minutes. It, it’s seconds. And I don’t think, and that, that’s, that’s what people, nobody wants to see that. And I can remember thinking that I didn’t want this lot to see Anna like that because I knew that it wouldn’t take very long before she really didn’t look like Anna anymore. After this.

But they were absolutely brilliant.

She did not look Like Anna for a couple of days. Mom.

They were nurses on the ward and the transplant scene were fantastic.

And afterwards, and it was, and made it very, I don’t know, very peaceful.

I am Lucy and I am Annie’s sister. We lost Annie two and a bit years ago.

Three years. Three years ago.

Three years ago. And organ donation was something that we discussed around the time that we lost her.

Yeah. I’m, I’m Paul. I’m, I’m his dad.

And, well there’s not more to, not a lot more to say about that actually.

And I’m Lucy’s dad and Tom’s dad as well, we think to, to avoid confusion.

I’m, I’m Allison. And I’m Annie’s mum. Lucy’s mum.

Tom’s mum, Paul’s wife.

And I’m Tom. I’m, uh, Lucy’s brother, Anna’s brother,

Paul’s son and, Ali’s son as well.

It’s great that, that all hang together. Yeah.

John, John Anna is still, was Lucy’s twin sister.

Both born on the Queen’s birthday in 1987.

Seven weeks premature,

Seven weeks premature.

And obviously Tom, Tom was Emma’s is Emma’s brother.

Three years younger. Yeah. They stopped because he got perfection.

Yeah. So, Anna and Lucy, we, we didn’t, we never regarded them as a unit
because we are always very conscious that twins are treated as a single unit.

And we, we did everything we could to make sure they were guarded as separate people, which is what they were.

Even to the extent of very rarely dressing them the same.

Although we’ve got dozens of pictures of where they appear to be dressed the same.

I dunno how that happened. So, so yeah, it, you know, she was a lovely individual and, I think, I think she made sure that she wasn’t anything like Lucy as well.

So they made sure they were both completely separate from each other. They were, they were completely, were children.

Completely different. Yeah, absolutely.

Chalk and cheese. Completely chalk and cheese.

And yet academically they were on a level, but we put them through school, nursery, infant school, junior school, everything.

They went, they were in separate classes for everything to the point that when they did their GCSE, some of the teachers didn’t even know they were related, let alone that they were twins.

So we did a good job on that score. Yeah.

But they had, um, they had completely separate friends, but still very similar.

Yeah, I think as well, Anna had a much more, I dunno, I don’t know what the word is, artistic view on life And the sense of humour that Lucy, sometimes I have a sense of humour. It was just very, that’s different.

It’s just not funny. She was, she, her humour was very unique.

Yeah, she was, uh, I think we, we became more similar as we got older.

Had more in common, had like separate friendship groups, but, you’re all friends. Friends in friends in common as well.

We would spend, obviously as you get older, you do just find your way together more, I think as you become adults as opposed to kind of grotty, hormone filled teenagers that, you know, fall out.

And she was incredibly messy, incredibly disorganised.

Like not even in an endearing way, like in a, like you want to throttle it kind of way.

So I think as growing up, that was quite frustrating until we got separate rooms, then it wasn’t so much of a problem.

But yeah, definitely as we got older, yeah.

Yeah, we had to extend the house so we didn’t kill each other.

But yeah, as we got older we definitely had that kind of a friendship as well as, um, just being sisters, I suppose.

If families are unsure then we’ll have discussions around that.

You know, there is lots of misconceptions about organ donation and often we can overcome some of those misconceptions when we talk about organ donation.

Even simple things like organ donation is completely separate from your care and your intensive care decisions about organ donation are not paid by the intensive care team. Looking after that patient where a specialist team that come in specifically for that purpose.

And also people don’t realise that organ donation only takes place after death. People think that we take organs and then you die. That’s not case.

And it’s these misconceptions that often people worry about and if we can have that open and honest discussion with each other, you know, the majority of the time we can overcome those concerns or fears.

I said before it’s easier to say “no”. Organ donation is a really rare opportunity. It’s extremely rare. Around 1% of the population can donate organs when they die.

So something as a society we’re not very good at discussing, we’re not very good at discussing dying in general. The majority of families out there haven’t discussed what their wishes would be in terms of anything to do with end of life care.

So when we’re having these discussions and you’ve no idea, that’s really hard. Plus you’ve got the grief and you’re trying to process everything that’s happened. The patients that we attend are very sudden and unexpected deaths, it’s not something they’ve planned for. So it’s really difficult for them with everything that’s going on to then have to think about something else.

And it’s really hard to put yourself in a position where you think how might I feel in 12 months time if my relative has gone on to save the lives of multiple people. I think if you’ve had that discussion it just makes it so much easier and you know you’re doing exactly what that person would have wanted.

Or if we can show evidence that they’ve registered a decision on the organ donor register, again families are comforted by seeing that those decisions are there.

Sometimes families find it difficult to support their loved one’s decision to be an organ donor, possibly.

That’s down to tiredness. They’ve been on the unit without sleep and by their bedside, and they want to go home.

Quite often we hear families say, um, I want it to go away. I want it all to go away. They can’t deal with that emotion. And sometimes we have responses to organ donation where families decline, um, without hearing the information and the, the good that it could bring, the comfort that it could bring.

It’s really important that we support families. What we really wouldn’t want is for any family to go away and regret that decision because that can impact their grief later down the line.

And we know from experience how much comfort organ donation can bring. And it’s about helping families see into the future, because quite often they’re only focused on that moment in time.

Understandably, their loved ones just died, their worlds fell apart.

They cannot see past this moment. So it’s the role of a specialist nurse to help them think about the, the times ahead. Yes, they’ll be difficult. This can bring some comfort,  helping others save the lives of others through kidney donation, heart donation, whatever it might be, can really bring them some comfort in the difficult times ahead.

And this really helps the most vulnerable people at this time who are your family.

So help your family and register today.

I wish I had talked with my Husband about organ donation before, as the uncertainty was challenging. Suddenly finding myself in this position while coping with bereavement was tough. They never recorded a decision on the organ donor register, and we never talked about it either, which left us wondering what he would have chosen. I have always been supportive or organ donation in principle, but I had never really given it much thought before.

The new opt-out system was explained to us by the nurses. This made it easier to know that we are all presumed donors now, and also that we did not have to think about his decision. We helped the nurses by giving information about his medications and lifestyle, this was a tough conversation, but we were reassured we were honouring his decision and that we were saving the lives of others. We wish we had more open conversation about organ donation when they were alive as it meant so much to us at the time. We will never forget what we were able to support him to do.

Often your families or your relatives have had a really long tiresome stay. They are exhausted. They’ve been given multiple amounts of different information from all different kinds of people. And to see one of our specialist nurses at quite at the end of the process after end of life care has being discussed and planned, starting to be made, it can be incredibly stressful.

Organ donation does take a little bit of time to set up. It’s incredibly important that we make sure that your organs are matched to suitable recipients and that the transplant is as safe and as long lasting as possible.

To ask your relatives and family for that gift of time from themselves to care for you for a little bit longer while we sought the organ donation process out, is a huge ask and not something that we take lightly. It is an incredible honor to be able to look after your family and yourself in the process of organ donation, but my role as a specialist nurse is to take the burden off your family.

If you’ve had that conversation about your wishes about end of life, it can become a very empowering situation. It can turn something that’s incredibly sad and incredibly horrible to think about into something that is an amazing opinion of saving people’s lives.

It’s also one of the only decisions that I may be able to tell your family, something that you have made in life.

It’s incredibly important to be able to empower your family, to support us through the process and ensure that we’re able to save as many lives as possible together.

So, um, I’m actually, um, I’m a social worker.

My dad was 63 and he basically dropped down of a cardiac arrest on the 23rd

Of, yeah, I don’t even wanna to cry, but I’m gonna cry because it’s like three years on.

I dunno why when he just dropped down on the 23rd of December.

Like, he was fine, he was healthy.

We also, ’cause of covid, he hadn’t been the doctor’s office.

He had a chest infection. Um, and he got him back.

But as it, as time went on transpired, it took them 20 minutes to get him back.

So he was like brain dead.

So he was never gonna come back from me, but I all grown up.

He a tall face, healthy man.

There was like, there was f*****g nothing wrong with him.

And then he was just, one minute he was there was next minute he was gone.

He was like brain dead.

So, he was in hospital in intensive care, the Panama.

He tried to get him back and then it was Christmas day.

The doctor says, oh, it’s been gone 20 minutes.

And the penny dropped it, like, you know, you know, good to anyone after 20 minutes.

So unboxing inside the organ, don nurses, um, you come around and they were taking like vials and vials of blood and all growing up.

We’d always talked. I told yeah, I’d be on the organ.

Don registered. It was never like, he never said he wouldn’t, he wouldn’t wanna do.

It was just always like a thing.

He was always happy to do it.

And then lo and behold he’d come to me and I thought him, yeah, a basic healthy man.

You what I mean? Like everyone definitely an at for a reason.

He’s died for a reason to give someone else like this Christmas medical.

And I was staying to the organ down and like, you’ll definitely get something from him.

Like, ’cause all those other organs were all fine issues, just horse and like packed and he’s had high blood pressure and all this.

So then that night he, he prepped him.

You took him down. And I didn’t realize that he, and he was saying to me, only like 1% of people get to be an organ donor.

You took him down, you’ve gotta die within that, that window.

And he didn’t die within the window, but it was mad.

Because then I felt like he was grieving for this other family that I don’t even know anything about.

But I thought, oh you know someone, someone’s gonna wake up and them, it’s gonna be all right for them this Christmas.

And they’re being prepped all night, you know, thinking they’re gonna, you know, their life might change for the better.

And then that didn’t work harder.

So it just didn’t really, you feel like, what was the point?

I mean, get why you’ve got a die within a certain amount of time.

You need be open to be ti off and all that for other people.

But, um, it just, it didn’t happen And I was, I was gutted for strangers, do you know what I mean?

But then, um, he did take his eyes and his eyes were donated to two different people, two different parts of the eyes, Don, which is nice and all that.

But um, I dunno, it doesn’t feel the same.

It doesn’t feel like you’re given the gift that life.

Do you know what I mean? To someone else?

Unless, no, but yeah, that was it in the snapshots.

Don’t cry about some the way I used to now, but it was, it was the biggest shock of your life.

Because you just, it just, no one was expecting it, you know what I mean?

And I think that’s a lot with like a lot of organ donations.

You don’t get organs off sick people.

The all die, the old die quick. Do you know what I mean?

So it’s a shock of that. But yeah.

I think my mum died then now, it’s three years this year.

Again, it was just a normal day. And I just remember the phone call from my dad saying mum had collapsed at home got sent home from work. She collapsed at home.

Dad called me a little bit upset, you know, the ambulance was there. So, I luckily about 10 minutes from here my mom and dad lived, where work we got there.

We just seeing the ambulance trying to rip the potato, kind of, you’re just in a bit of a day. It’s like, what, what is going on there? And uh, obviously when got to a hospital and once you know you’re there, worrying, you’re like oh, what’s going on?
And then it kind of, once, once they’d done what they needed to do and all the checks they let us know.

She had an aneurysm, and unfortunately it had burst and it was quite a big one. Um, so they’d obviously induced cor with her, and I think it was over the course of a week then tried to wake her a couple of times and it, you know, it wasn’t,  wasn’t happening.

So each time they put her back on you know, juice coma. And then I think after the second time, a couple days after the second time, the checks that they do, like the slight eye movements with under light and stuff like that, that had all stopped, that they had to do further checks.

And when we obviously had the bad news that she, uh, unfortunately had not made it then. Yeah. Yeah and then, as you can imagine, it was like everything was just so quick, you know, it was a week, do you know what I mean?

From everything being fine to that day, boom, collapsed and then a week later passed. So it was a bit like what, you know, everything so quick and just shocked by it all how quick, and you know, unfortunately that is life, unfortunately.

And, we understand that. And then, yeah. And then obviously conversations with, with the donor people came in then yeah.

So in my experience in in this role, some families struggle with the timings of organ donation.

So as we’ve already mentioned, it comes at a time when families are feeling a lot of very heavy emotions, and they’re often very overwhelmed by that patient’s ICU journey and their hospital journey so far.

Sometimes it can be very rapid, it can be a few hours or days into that patient’s hospital admission, and that presents its own challenges and sometimes some families it’s, um, sort of weeks and months into their hospital admission, which can present exhaustion challenges.

The other challenge for families is the amount of time it takes to match organs to suitable recipients. This is something that we do so that we can ensure that high quality transplants go ahead, and that so that we can get a specialist service of really highly skilled surgeons. So at hospital, this can sometimes take time. They can be traveling from hours away. The bottom line is that’s so that that donor gets the best quality care and gets the best and gets the best outcome for those transplants.

So I do see families struggle with timings quite a lot, but that is something that I’m there with them on that journey. It’s normally one or two organization nurses in the process from start to finish that we’ll see this process through.

So we we’re there with you at the time as well.

I sat with Susan and then the transplant nurse came and said, are you all right now to come and talk to me about the transplants? I said, yes. Okay. So she took me away to a little room and made me yet another cup of tea, and she had one as well.

And we sat there. And so she, she told me a little bit about, um, what would happen in so much as, um, they would have to wait until they’ve matched her up with other people to see if they can, you know, donate heart, lungs, kidneys, and so on, matched them up.

So they would, they would allow a couple of days for that to happen. And then they would unplug the machine and she would need to die quite quickly after the machine was switched off, and they would expect that she would die quite quickly. But they, they said sometimes that doesn’t happen. And if it goes on for too long, I think it’s only a couple of hours. I can’t remember now. Yeah. Then they can’t use those body parts, so I assume they must deteriorate to some point.

Once that’s happened, she’ll be taken down to theater just as if she’s going for an operation as if she was alive, taken down to theater, and they would operate on her, take the parts that they, they can take. For Susan, they took her kidneys and they were matched. And two young women, both in the forties, each got a kidney.

They were going to take her, they took the heart, what are they called? Little bits that are in the heart. They took those. but the lungs, they took the lungs and then when they examined them afterwards, there were some lesions in and they think that at some point she could have developed lung cancer. She had been a smoker up to about seven years before that, so they couldn’t use those.

But she said, you know, that they will go through everything and they will, she’ll all be stitched back up again.

She’ll all be made to look like a proper body again, and then she’ll be brought back to the wood and then will, you know, make her look presentable, wash your hair and all the rest, which they did. And then you can come and see her again after that if you want to.

So then she started with the paperwork. So I thought I’d just be signing a document to say, yes, I agree that you can take all the bits you want, but it wasn’t like that at all.

So she went through it in, in order all the different body parts. Did I agree to this? Did I agree to that? So I had to sign every one. And then there was the bit about, yes, they can take some parts just for research to help, you know, find out more about diseases, things that kill us, things that make us very poorly.

So I said, yeah, I hadn’t realized that, but that’s a good thing as well. So I was quite happy for that. It probably, I don’t know, it probably took half an hour, something like that. But she was very patient and if I hadn’t quite grasped something, you know, I said, well, I’m sorry, just read that bit again.

So she would explain something, read it, and then I was signing all the documents after.

She was absolutely lovely.

And I met her again when we did the St. John’s Ambulance Award, and she came rushing over to and threw her arms around me. She was a wet rag by the end of the evening because she cried with everybody. At least we only cried once, you know, but she cried with everybody. But she, she was lovely.

And I think all the transplant nurses that were there on that night at that award ceremony, they were all chosen to do the job because they had that empathetic nature and a lot of understanding about how you are, how you were dealing with things.

They were caring for Susan, they were caring for you and helping you to deal with things. And I found that they just had that knowledge and that ability to help me get through. And I’m sure that’s, you know, that’s what they trained to do and they did a good job of it.

So it was nothing to be afraid of. It was a straightforward process, just a bit longer winded than I thought it would be. But yes, you know, they were absolutely great with that. And I didn’t have any more form filling in to do, anything else to agree to, anything else to sign. It was all done and dusted in that half hour.

And then, yeah, I could go sit back with Susan or go home, do what I wanted, and let them get on with things, which is what happened.

So, yeah. So it was after you’d been taken to intensive care, there was, is it a specialist donation?

Organ donation nurse took us into a side dream and obviously said, told, which I knew was who the Gareth had requested to donate his organs.

And he just, Gareth’s mum and dad were there, so he started going through like, a questionnaire things, you know, he did explain it well, and explained, you know, the process, but then it, he was talking about obviously what parts of his body that we wanted to, for him to donate.

So they just went through a list of things, you know, ranging from his eyes. I can’t remember what they said now, corneas or something like that. Just would you, are you happy for us to take this? You happy for us to take that?

And you know, you feel, yeah, it’s just thinking back, you know, you just, I was just numb and I just kind of didn’t really take on board properly what they were saying. And yeah, it’s to say, you know, to say you can take this from the person who’s the most important person in your life to say, oh yeah, you can take this, you can take that. And having to decide what, you know, what you’re happy and not happy for them to take when you are in that sort of state of shock is, yeah, it, it just made me, made me feel quite sick, really, a bit like you were saying, it was okay for to, you know, chop his body up, really.

So it, as much as I understood why, and I know that some, you know, people did benefit from that, and it did give you a bit of thinking that that’s probably what Gareth would’ve wanted. That he would’ve wanted to help somebody. But I think it was just. I can’t believe I’m, I’m sort of saying this to this person that, oh yeah, you can have that, you can have this, you can have that.

And yeah, it was not a nice experience to have to say that, to say that you can take these bits out of his body. I just went through the motions, I think of just saying yes and no.

Obviously it did help that Gareth’s parents were there as well, so they could have their input on what I was saying.

But, yeah, it’s not nice to have that. To think that parts of him and I thought, and I kind of thought at the time, I thought ‘is he definitely dead?’, because at that point, they hadn’t done all, they said they had to do tests to check that there was no sign, you know, there was no sign of life.

I knew that they had done that at that point, and I thought, well, what if he shows a sign of life and I’m having this conversation?

So yeah, it, that’s the horrible, horrible thing to have to go through for anybody.

On reflection, you always sort of look back over these things that at that huge meeting with 20 odd people there, the transplantation team were there.

So they, they were quite open about the fact that if this goes the way it’s inevitably going to go, then, you know, and they were checking that what we’d said earlier on is still what we wanted to do.

So that conversation wasn’t just relying on what we’d said however long ago it was, is this still what you want to do?

Because clearly the way of getting places to accept transplantation has changed the fact that Anna had, um, you know, an infection driven problem was obviously going to be causing difficulties because then you have to explain to the people that you’re trying to give the organs to what the thing is, which is why they ended up with nobody being willing or able to take any of Annie’s organs because nobody knew what the infection was that was causing the encephalitis, whether it was bacterial, whether it was viral or whatever it was.

Because they couldn’t do a lumbar puncture, which is what they wanted to do to start with, but for whatever reason.

So they weren’t able to identify the infection. So of course nobody would take an organ, which potentially is harboring a, a, a latent infection. But the, the process up to that point, so on the, we had the big meeting with everybody on the Tuesday, and then on the Wednesday they did the confirmation brainstem tests.

But Tuesday Had transplant, didn’t we finish?

So, so on the Wednesday they’d done, they did the brainstem tests, and then that was about half past 11 where the confirmation, was given that her, that her brainstem was no longer functioning.

And then from that point on, obviously it, it was then we were then in lots of discussion with the transplant team.

They were based, um, in a room on the, in the ICU.

And they started doing their work and we were able to sit with Annie for that whole time.

And basically we’re kind of given, you know, hourly or a couple of hourly updates on, because it goes out to the centers, doesn’t it?

But it, what we were, you know what?

We weren’t left sitting there for hours and hours and hours. It was, this is the, you know, we were asked which organs we would want to donate. And then we were kind of, we were updated the whole time.

So like dad says, unfortunately nobody would, nobody was able to take her organs in the end. But it, they kind of almost went through every organ and every place. And the hospital were amazing and we kind of, we, we were there till about kind of one or two in the morning in the end when the last, the last kind of, um, no thank you, came through.

But at no point were we left for more than a couple of hours before we got another update.

So in terms of the transplant team that we experienced, it wasn’t a case of Right, we’re gonna disappear off and we’ll see you in a day. There was always somebody updating us.

Yeah, there was always somebody keeping us in the loop.

They were kind of really apologetic every time a no came back, even though it was completely understandable why and no came back.

So from that point of view, I think for, for families who are going to be possibly going through that experience, I think that the teams that we, that we kind of had experience of, um, you know, were really supportive, were really kind, EE every point they kept asking, are you sure this is what you want to do?

Do you want to continue? Um, you know, we can stop now if this is too much. So it wasn’t a case of you’ve said yes and now we’re gonna plow on and make you feel uncomfortable.

It was every opportunity we were checked in with to see is this still your choices is still what you want to do?

Are you still happy to continue?

And I think knowing that that happens is really important because the fact that you can kind of withdraw your consent at any time, should you feel like it’s too much, or should you feel that actually it’s not what you would like to do,

They also didn’t make us feel like it was a clinical procedure either, did they?

They were very, they were very human and we didn’t feel like you were in a clinic donating.

It wasn’t like that. It didn’t, it didn’t feel that at all. And whether it’s speak to, to Macclesfield or whether it’s endemic in all the hospitals, but the, the clear partnership between the intensive care staff, doctors, mercy support staff, and the, I pre presume it was the MVTS, you know, was, it was seamless, so it wasn’t as though they bust these people in that there clearly is a partnership for those two separate groups of people.

Mm-hmm. So, which, which just makes it so much easier for the family.

Yeah. I, I think what people, what was explained to us, what people don’t realize is that Annie could have gone down to theatre and had whatever donated organs were going to be removed, and then she’d have come back to the intensive care unit and we, we could have sat with her again.

So, you know, there was, there was no, she goes down to theatre and you’ll never see her again. The next time you see her will be at, at the undertakers or wherever we could have, we could have sat with her. There was no, there was no push to do that.

They were, yes, very, very professional, but very, very human and yeah, it made us feel part of a family really.

By the way, this is, this is Anna. This is Anna’s cat. She knows what she knows.

Organ Donation is incredibly rare. You have to die in very specific circumstances and often your admission to the intensive care unit has been an an incredibly tragic circumstance.

Your family’s often in shock, frightened, worried about what the future ahead may look like,and organ donation may not be something that anybody has ever considered.

It might be something that you have considered and opted into the Organ donor register or assumed, presumed consent with our new law change.

However, it might not be something that your families have considered or talked about, and that’s why it’s so important that we share our organ donation decision.

Organ donation is a very normal part of end of life care. It’s something that is happening and is a conversation that is spoken about with all relatives who are suitable for potential organ donation.

It’s something that we need to speak about more and be a more tea time topic conversation. Our decisions and what we want of our wishes are as important as what we wish for after the process.

In terms of our funeral plans, our song choices, organ donation is all part of the exact same circumstances.

Families can often feel overwhelmed and in shock. They may have not been anticipating that organ donation would be brought up. It’s incredibly rare. People don’t know much about organ donation. They know a lot about transplant but organ donation is something that’s rarely discussed.

In order to be a potential donor, you have to die in very specific way. Some families really struggle when they hear more about the process, which is involved in retrieval. For example, time is necessary to to match the organs  to recipients, and to prepare for the the operation.

We also need to work with specialist surgical teams who come from around the country. They need to be mobilised in order for the retrieval of your organs.

Once we’ve found people who you’re able to help through your donation and their transplant, this can be really tough on families. Many don’t like to think about surgery. They can be really exhausted, having been with you through your intensive care stay. They just want everything to be over.

So many families get so much back from organ donation. Reassurance that their loved one was able to save other people’s lives and there’s a legacy to what you’ve done.

So much easier for families to to know what their relatives wanted if they didn’t know. It makes them difficult. They feel as if they have to make a decision on your behalf.

Sometimes families find it difficult to support their loved one’s decision to be an organ donor, possibly. That’s down to tiredness. They’ve been on the unit without sleep and by their bedside, and they want to go home.

Quite often we hear families say I want it to go away. I want it all to go away. They can’t deal with that emotion. And sometimes we have responses to organ donation where families decline without hearing the information and the good that it could bring, the comfort that it could bring.

It’s really important that we support families. What we really wouldn’t want is for any family to go away and regret that decision because that can impact their grief later down the line.

And we know from experience how much comfort organ donation can bring. And it’s about helping families see into the future. Because quite often they’re only focused on that moment in time.

Understandably, their loved ones just died, their worlds fell apart. They cannot see past this moment. So it’s the role of a specialist nurse to help them think about the, the times ahead.

Yes, they’ll be difficult. This can bring some comfort. Helping others save the lives of others through kidney donation, heart donation, whatever it might be, can really bring them some comfort in the difficult times ahead.

Well, I dunno, it was a shock because he was, he was brain, I mean this is the thing,

I don’t even know whether a long donation, but he was brain dead.

But you’d talk to him and at the exact moment you’d say things, his eyes is water.

So it would make you wonder whether, are you really brain, do you know what I mean?

Are you really brain as or not?

So I’d say like, oh me sister, like Stephanie’s beside herself.

And you’d go was the thought of him, do you know what I mean?

Doing all that. Um, he was just in a bed and you’d go into intensive care and the staff would like act like they were there.

And one time went in, he was having like seizures all the time.

So he was like, like shaking like in the bed.

But like, and I was hysterical and they were like, oh, you know, should we give him this or should we give him that?

I said, he’s gonna f*****g die anyway, just, just give it to him.

Just give, just give anything to me. Okay.

And then he got like a Kohl’s and I went in and the nurse was like putting myself up, but it’s also, he’s just been lying there like the care.

But all that time. But I didn’t stay there for long myself.

Like, you go in there, what can’t you do?

Do you know what I mean? I was pregnant at the time and I had my other son at home.

So it was timely limited for everything.

And you knew, I knew at that point it wasn’t gonna make it.

You were like waiting for them to die.

And I was saying to them, this is going on and on just like Indy.

And the doctor was like, well no, because that’s euthanasia and it’s illegal in this country and blah blah blah.

You ring up, you ring up and you have that same, that tune.

It’s in your head. And every time here I think, oh my God.

Because you’d be on how old waiting to, to speak to someone.

It’s just, and you’d ring up.

I mean Christmas Eve it is that, yeah, that happens on the 2030s as an operation.

You were. And on Christmas Eve I rang up and he said I withdrawing the, knew the medication and the anesthetic.

And I was like, well I’ll just react. You react to it.

And he went, so um, daddy, he broke up and he didn’t react well to it.

So he was like, so he’s awake. So, ’cause I thought he’s not gonna like that ’cause he hasn’t knew what’s happened to me, didn’t like any like medical intervention.

And she was like, oh yeah, yeah, we also also have had to up against I, oh he’s gonna be fine.

Because he woken up. So it fine.

Christmas Eve it was all, and then Christmas day she was like, mom shell of like, because you only like one person at a time ’cause of all this covid thing.

And then they said to me, oh go and get your mum and if you want to speak to the doctor, because she obviously knew and you get fine, the nurses are going, oh, we don’t know.

We don’t know. You need to speak to a doctor and you all do freaking know you what I mean?

Instead of all the p***y floating around, he was, you just say, um, but he was only in there for a few.

He was in there until he’d done went talking down the organ donation thing.

Which again, it feels like a waste of time.

All these doctors are all work and the middle of Christmas standing around for three hours waiting for you sir, packing in and then it all comes to nothing.

Do you know what I mean? And then he, you get, we went to a palace of a ward and he was there for like days and days then.

And it was only when I said to him know, I said, when anything cry this time I said, you can go now.

You went that nice. Do you know what I mean? Went new.

It was like New Year’s Eve, new Year’s day.

He went, it was just, I dunno, bizarre.

But then a bit of me think like he didn’t like medical intervention of any kind.

He never ever like, thank God he never got cancer ’cause he wouldn’t have dealt well. I thought it

Was the the best place to go for them when it comes to it.

Did he really like, I dunno s**t himself and didn’t want the organs taken.

Do you know what I mean? Because he was still there in the head.

He thought, oh no, no, no, you’re not doing. That’s amazing.

You know? I don’t know.

Is is there some, is the more, that’s the thing no one knows ’cause no one comes back.

I’m being brain dead. Really do, unless it’s some medical.

I think one of the issues that would be different now is this happened towards the end of Covid.

So, at the point that she died we were here at home. She was a big girl, very overweight, and a big tall girl.

She was upstairs on my bed and I sort of knew them and I remember saying to the Ambulance men as they were getting her belongings together, and I said, her handbags here. And he just said ‘she won’t been needing that love’, and I remember thinking, oh, okay.

She never went anywhere without a bag, but they couldn’t move her so they went to get another ambulance and then to get the fire brigade. And they moved all my furniture out of the way to make a clear passage. They had to get a special stretcher.

And I remember sitting in a corner of my living room because I couldn’t do anything. I was just in the way, there’s all these men in great big boots and other uniform fire, things, all the trooping around the house and up and downstairs. And I thought, oh my God, what’s happening?

My life sort of suddenly changed and eventually got her out and laid her on the pavement in the stretcher in her nickers and a t-shirt. And I thought, oh, she, she would be horrified, but eventually, you know, they said, right, we’ve got her out. Let’s get her to hospital. You can’t come.

So I already realised that I wasn’t gonna be able to, to go with them. So during the night, uh, well it took me an hour to put all my furniture back.

They’d ripped all my bedding off and threw it in the shower, which was wet. So I had to get that all in the washing machine. And then I got my bed all made up and I’m thinking, I’m going crazy. My daughter is dying in hospital and I’m making my bed up. But it, it also was part of how life goes on, you know, I needed, I need my bed. I needed to lie there even if I couldn’t sleep. And so I did all that and got into bed and I was just dozing off. And the phone rang at about half past one in the morning, and it was [PLACE] hospital. She’d been taken to [PLACE], and it was the surgeon explaining what had happened, that she had had this bleed on her brain.

The surgery was set up and ready and waiting for it, and they would ring me again as soon as. So got another call about half past five in the morning to say it was all done. It wasn’t quite as bad as they’d thought, but wasn’t looking, you know, very good. And they would ring me again the next afternoon. So that was Sunday.

Then, well, Sunday morning was clay pigeon shooting and I thought, I can’t sit here pace in the house. And all my friends, all my boys were shooting and they’ll wonder where I am if I’m not there marking the card. So I went down and I said to everybody, don’t be alarmed. Susan’s dying, you know, I can’t do anything about it. I’m here because you are gonna keep me going. And they were all a bit stunned. I said, oh, right, yeah, we’re not gonna talk about it. Let’s just carry on. So we carried on and everybody was just a bit quiet, so I jolly them along.

And I got through the morning and I got home and I sat here and then the phone rang again, can I come in? I said, right, okay. So I went into the hospital by about half two that afternoon. So they sat me in a room with about, I can’t know, the room seemed to be full. I think there were about three, four doctors and about five nurses. And one of them said, right, Susan has suffered this massive bleed. It’s done a lot of damage. And I think the words they used were, it is not survivable. So I said, right, okay. And I’d sort of come to that conclusion anyway, and I also didn’t want her to have had massive brain damage and live, you know, and be on machines for the rest of whatever you can call her life.

So I said, right, okay, you know, I can deal with that. She says, but it’s not survivable. I said, yes, yes, I understand. So then one of the doctors said, no, what we’re trying to say is she is going to die. I said, yes, I understand, I know what you’re telling me. Right. Okay. So they all got up and went out then, um, we’ll leave you with the, the nurses. So they took, do you want to go through? Yes. So I went and sat at Sue’s bed.

My first thoughts were that she was cold. And I told one of the nurses, they came and fell her hand as she a bit, so they put a blanket over her and I sat, held her hand, and I thought, she’s not here. When I held her hand there, it was ice cold, it was rigid, you couldn’t hold her. It was just rigid, and there was no life. They said, she can’t hear you, she can’t see you, she can’t feel you. She’s absolutely no recognition. She doesn’t know you’re there. And I thought, right, I didn’t feel her. The presence wasn’t there. She had gone, she was long gone.

And from Saturday night to having the bleed to that was Sunday afternoon, but then they turned the machines off onto Tuesday morning. I don’t feel like she was alive then. And I feel like she died here. And people say, what day did she die? And they always said, well, it was Saturday. Strictly come dancing was on, that’s when she died, you know, the rest of it.

She was just a body. There was nothing. She’d gone, you know, I sat and held out on the bed while we waited for the ambulance. And, I sort of felt a fading away then. And I prefer to think that that’s when she died and I was with her. So to see her then as she was immovable, immobile, no sensation to her face, just nothing.

Now, I think maybe that made agreeing to the transplant easier because it wasn’t my Susan having said all that, I remember watching a program, it was one of these about the coroner, but on this particular story, it was on a lady who died and her husband was there with her. And I thought, oh God. It was just like where Susan was in the ICU, but they never left her, they never left her side until they took her down to have transplant.

And I thought I couldn’t have done that. But everybody’s different, you know, she had all her family all sat there and they ended up talking about the football and having a coffee and, you know, round her bed. And I thought, what was the point? She, she, my Susan was gone long gone.

I did go back once more and I’d nearly five, ten minutes with her, but that was all.

If, I don’t know, because obviously with I knew, I know I was aware.

Obviously with organ donation there’s like a time limit. I think they’ve got to take the organs. I mean, I don’t know ins and outs of it very well, but, um, I think to make it easier, maybe rather than having to question the family when, you know, at time when you just in shock and you know, just going through so full time.

I don’t know. Something that would’ve made it easier is if, you know, the person who was donating the organs. I don’t know if they can do this now or not, but it’s like so you know, in advance what they want to donate. So you’re not having to go through this questionnaire of almost like, um, I don’t know, it’s probably difficult, but to, I’ve got together as a family, you know, if it’s possible to sort of say if anything happens to me, you know, I’m happy for this to be taken, that to be taken.

So in a, as much as you can’t, you know, somebody that passes away could be any circumstances, but if it’s the circumstances where you can donate, rather than like happened with me going through the questionnaire of what, what you can, what you’re happy for them to take from this person, for that person, to have already said, you know, if something happens to me and I can donate, then I’m happy. You know, these are the things I’m happy to, for you to have. And that for it all, you know, for them. But if it does happen then to say, you know, that yeah, I remember, or we’ve got a copy or something of saying, yeah, well, you know, Gareth said, you know, just to remind you Gareth said about this, and that you say, oh yeah, yeah, I remember that. And rather than having to go through all the, that paperwork and the asking those questions when you can’t, just can’t think straight.

So I think that would make it a bit easier and kind of, you kind of feel a little bit, I felt a little bit rushed into making a decision and I, as much as I know we’d had that conversation, I did feel a bit that I had to, you know, just there and then say yes or no rather than giving a little bit of time to sort of get my head round.

It really, because I mean, to be honest, when I was reading, when you scheduled this meeting today, I was reading about organ donation and I wasn’t aware that you just, although somebody can say they’re going to donate their organs, if the, you know, the family of the, the, you know, the final saying it Well that I wasn’t really aware of that.

I just thought, well, I didn’t know. I kind of wasn’t. So, you know, as they said to me, you know, as much she was, sorry, I dunno if I’m making sense, but he’s not, he is an organ donor, but, you know, if it doesn’t, if you don’t feel that’s right, then, you know, we don’t have to do it. And, you know, that’s the end of it.

So I think that thinking back, that’s how I felt a little bit. I didn’t have that time to process what it all meant, and it was just very quickly.

My son registering as an organ donor made everything so much easier during a difficult time. Knowing their wishes, we were able to fully support and respect that choice. We talked about what this would involve. He made it clear that he wanted all of his organs to be available to transplant, and that he didn’t mind that this would involve surgery. The process was made smoother by the fact that he had registered his decision. We felt very proud of his decision, it’s just like him to want to help others. For us, knowing that his decision has changed the lives of other people, has been a small but meaningful comfort through the process of grief.

We just went in.

Oh yeah, no, I was say because because he was the brain thing.

You were like, you need to think about what you want for him.

And your mum was like, well he’s not gonna wanna be in a hair like the way he is now.

You’re just gonna keep him on a ventilator for the rest of it.

Like, he’s never gonna wanted that.

And I just feel like I went in and it was Boxing Day and it was specifically boxing out.

It was a male nurse, like a young, a young nurse and he was lovely and all that.

And he was there like doing the rounds and it was, um, it was just like, yeah, I already had to talk about, so yeah, he would to talk about talking donation, just so you knew your dad was on the register.

So it was like he turned off and like they would already kind of had like a bit of a plan.

I think the doctor might have mentioned it on the Christmas day, but would’ve been in brief if, if she had, it wasn’t like a big thing because that was the bombshell of like, you know, he’s not coming back.

Because when if they sat on the doctor said, you either, either wake up and you’ll be all right.

He won’t wake up at all or you’ll wake up and he’s gonna have like significant needs type of thing.

And I never thought at that point I was not gonna not wake up like the naivete obviously.

Then on s having bomb shoulder with the boxing, it was just this young glad and he was talking to us about it.

And then, um, there was another nurse taking all the blood outs.

And then I think me, mom and my sister then sat and done all forms.

I think there was forms to fill in or something and they sat with him.

I didn’t do that meeting. Yeah, they sat and done it all.

Yeah. But in comment it couldn’t come to anything.

So, I can’t remember how long after it was, I don’t know.

Within the hour, I’d say two nurses. I think they were part of the donor team that came in and had a conversation.

So, I’m on the donor list as well as my sister. We both are and we both support it. Um, but I think what kind of highlights,

I think it’s quite easy to say, this is my opinion, to say, yeah, I agree to be an organ donation, blah, blah, blah.

But I think when you’re in, then in that scenario of that, that the real, that’s when you really realise what’s involved in it and, and what the process is.

And I think that was more of the, it’s, it wouldn’t have changed our minds, but I think it was more like yourself, you know, with your research.

And I think maybe if it was highlighted a bit better, or I don’t know if I’d not read it somewhere or something, or, you know, the patient being, having to kept, kept going through the machines to keep them organs going.

And I, don’t know why but at the time I didn’t think, I didn’t think that was, that was the way it went.

I don’t know why. Now looking back, I think, well, yeah, it makes sense.

They have to do that. But at that time, yeah, it was more, and I think because like, you know, we knew she’d gone and keeping that machine going just for the sake of it and stuff.

And, but, the donor people were quite helpful to be said. It did say, you know, this is not gonna go on days.

It, it’s literally like, if, if we can, if we can do something and we can do it tonight, then it’ll be tonight.

If it’s not tonight, then it, it won’t it. So that kind of helped a little bit as well.

It is hard to think if we’d never signed a register, say, and Susan was then, you know, and I was then asked, you know, do you want to do this? Then I suppose… I don’t remember. It’s hard to think because we wouldn’t have, we may not ne never discussed it, so if we’d never discussed it, we’d never signed a register. How would I have felt then when the law would say, yes, they can take these body parts. I have to agree and I, I could say absolutely no, but I, I, I think, I’d like to think I would still have gone ahead with that.

Yeah, I, I would’ve said yes, because obviously our frame of mind was that it, it was a good thing and we would do it. So I’m sure we, you know, we would both, if she could have been of that same mind under those circumstances, but I don’t know.

Knowing my Son’s preferences made a world of difference when it came to supporting their decision to stay longer in ICU and undergo surgery to donate their organs. It’s a difficult process, David still looked alive when on life-support even though they were confirmed to be brain dead. Having the life support turned off and having to leave them for the organs to be taken was so hard. But we had those important conversations about organ donation. They made it clear – they wouldn’t mind spending more time in ICU or having surgery if it meant helping others. Having that clarity eased the whole process for me. I didn’t have to second-guess or worry about deciding what they would have wanted. It was a relief to know I was supporting their decisions and making a difference as they had intended. This helped us as a family.

The nurse sat me down, the transplant nurse sat me down with a cup of tea in a little quiet room, and I was surprised at the amount of paperwork, but we went through it, you know, with another cup of tea.

It was sort of going through every single organ. Was I happy for them to take her eyes? Yes. Her skin, yes, her heart, you know, and we went, so yeah, we got through that quite well.

I only had a, a snivel once, the nurse said that I was the easiest one she’d ever dealt with, but maybe, you know, I’ve managed to compartmentalise things and knew I just wanted to get through this and do this for Susan.

It was what she would’ve wanted. Yeah, I never gave it another thought after that.

And as far as the actual transplant, they ran me up that morning and said they’d unplug her. She had died very quickly then as they expected her to. And I knew that if she didn’t die within so many hours, they couldn’t use the organs. So I was like, willing to die. Just get on with it, Sue, you know, don’t hang around. And then this is wrap. We’re taking it down now.

We, it was a full theater, proper operation. So we did all that and then this, right. We brought her back. We’re going to go and give her a bath now.

We wash her hair. So I thought, oh, oh, that’s lovely. So then they ran me up.

She had very long, a lot of hair like this. Not pink, but a lot of hair, very long. And I remember them ringing me up and saying, right, she’s beautiful now. But, oh my God, the trouble we had getting through all the, the knots in her hair after all she’s been through over the last few days, you know, but we’ve done her best.

And they’d shaved all hair at one side because she’d had a brain hemorrhage. So they’d, they’d done brain surgery. She says, but we’ve covered it all over. We’ve made it look pretty, you know, so I said, right. That’s absolutely fine. Thank you. And that was, that was the end of it.

I was very glad that we’d done it. Glad we’d talked about it previously, because I didn’t have any doubts. I didn’t have to debate within myself, which was the last thing I would’ve wanted to do at that moment. So it’s a good idea. It’s a good idea to talk about it.

Since then, I’ve talked to my family and my sister had always said, oh, absolutely not. No, I couldn’t, I couldn’t be doing with anybody messing around with me or my girls.

And so it’s not messing around. It’s, it’s surgery, it’s clean and clinical and surgery, and these dead people are treasured and looked after. So I said, well, maybe I will. And she has changed her mind and come around to it.

She says, ‘but they can’t have my eyes’. I said, ‘well, they don’t have to have your eyes’. You know, you can pick each individual body bit. She said, ‘well, that’s my soul. It’s the eyes to my soul’. So I said, ‘well, if that’s what you think, you can keep your eyes, you know, nobody will argue about that’. So keep your eyes, but let’s get the rest doing some good.

So that was the end of our story. Susan was awarded the medal from St. John’s. So we were invited to, the county hall in Preston with about another, about 25 families. And we were presented with a medal for, which was lovely. I enjoyed that. So that was the end of it.

But it never is, you know, these people are always with us daily, but, and I think for us, less of her physically, she’s still the whole Susan, you know.

I don’t know.

I just think you’ve gotta be a certain type of person.

Oh, I dunno. I mean grief affects people in different ways, but I think you’re quite selfish if you then turn around go, no, no, no, no, no, you’re not, you know, you’re not touching them ’cause he’s freaking the dead.

Do you know what I mean? Do you really want someone else to die and be like that?

But I dunno, people aren’t all the same or the way, it’s not a fair place and people have, I dunno bit about life and all that sort of stuff.

I dunno. Success stories really.

And I dunno, um, being clear, I think that’s probably the one thing that changed.

Look back, got a diary in like a, a certain amount of time.

I don’t think it, I totally got back, when it was that, that day.

Because I was waking, I woke up and remember bringing up and thinking, is it done?

Yes. Is it done yet? Like when no one drank, no one drank and it went on, it was like home like 12 o’clock before someone rang and said, oh actually I think if was a noon, nah, I’d have,

I had a different, a different view on it.

Something like, do you know what I mean?

I just, I dunno, it was, was very anxious time.

You’re constantly waiting for something.

Do you know what I mean? But then that’s, people say I’m selfish.

I think other people are selfish.

But I do just think like, why are you holding onto something to let someone else die?

It is selfish, isn’t it? You’re going anyway, the 1% thing.

Because you don’t get why that until you get the three hour thing in your head.

Do you know what I mean? Only 1% I think people think, oh you know, the nan’s died to cancer.

Someone could do, you know what I mean?

Just people just don’t know.

How pause it is.

I dunno, it’d be a brutal fear or a brutal thing to put to the public that if you acutely die, if you drop down dead suddenly that’s the only chance you’re gonna have it being an organ doing it.

So we don’t think it’s an easy task what you’ve got because that is the harsh reality of it, isn’t it?

You’ve got any other elements in your body, it all impacts.

So, so yeah.

I don’t know. Maybe treat you through like a religious thing.

So saying there’s an no ch the church and all that, they more get people to come to terms with death and make dying easy and all that.

I dunno, that might be a better angle to like, to go down.

Like if you can’t do that, you know, God has give you this path to help someone else.

That might be a way of getting numbers off me.

I don’t, I don’t.

I think, I think it’s, it’s the intactness Yeah. Of, of the person. Because when we, when, when I, when I had my first conversation with the transfusion, the transplant people, you know, they said, are you happy for it to happen? And, and I said, yes, except for our eyes.

Yeah. Because they’re special.

Yeah. So, You know, just to extend that principle, I think there, there will be families, there’ll be people who perhaps didn’t have the support, the care, the, the love that we got, presented with this situation.

And the last thing they, they’re, they’re thinking about or want to happen is that part of their loved one who, who they, they’re losing will be taken away.

That’s what they’re thinking of. Not the benefit to the other people that Lucy pointed out. So I, and I don’t know how you get around that, other than the way it’s approached.

The fact that we were having the continual discussion all the time.

Anna was ill, and in some ways we were fortunate in that we have three days to work through that.

There’ll be people who don’t have that time.

So it’s very immediate. The questions will be asked.

And you’re getting used to the fact that, you know, your loved one is, is not gonna be here.

You know, and we were on a slope that went like that. We didn’t go down like that.

So there’ll be all sorts of factors. And there’ll be people that it will be impossible to persuade because it, you know, of the way they feel.

So I mean, from my perspective, all I would say is that what we experienced made it so much easier. You know, however you look at that.

I can, I can also say, and this is, this is a very honest, that when, when nobody wanted any of Anna’s organs because of the infection risk, we were happy.

A little bit of me was relieved. Yeah.

Because absolutely it meant that I got all of her.

Yeah. But I, but I still would’ve done it.

If, if he could have done, I’d have,

I’d have, I’d have done it. But yeah.

We’re in favour of the ‘deemed consent’ legislation because it means more organs available, and more lives saved. Losing a loved one is never easy, but organ donation can offer comfort. When our daughter passed away, organ donation was the one positive thing we could hold onto. Knowing her choice could make a difference for others brought a glimmer of light during those dark times. The new legislation gives hope that more families will support organ donation for their loved ones.