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Organ donation

Before going to hospital

The time before hospital admission was difficult and traumatic for the people we interviewed, particularly because some events were sudden, unexpected and dangerous. Most people had not been with their relative when the first event occurred and had not realised then how serious the situation was. This added to their shock and distress.
 
Usually, organs that are suitable for donation come from people who have died suddenly and unexpectedly. Generally, this is after they have had a brain haemorrhage, a stroke or a major accident like a car crash. All of the donor families interviewed consented to organ donation on the death of their loved one. This was after the patient had spent some time on a ventilator (life support machine) in a hospital intensive care unit (ICU). During this time, everything possible was done to save the life of their loved one.
 
A brain haemorrhage is a serious, potentially life-threatening condition where blood leaks out of blood vessels over the surface of the brain. Some of the donor families said their loved one had died of a severe brain haemorrhage, although they had not known what was wrong when they called for an ambulance. Their relative had collapsed completely out of the blue and, at this stage, they had no idea it would be life-threatening.
 

Catherine’s son, Tom’s stepson, looked asleep. When Tom couldn’t rouse him, he put him in the...

Catherine’s son, Tom’s stepson, looked asleep. When Tom couldn’t rouse him, he put him in the...

Age at interview: 63
Sex: Male
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I passed John’s bedroom and I could see him laying on the bed, in his shorts, he’d obviously had a shower. And he was snoring, but I thought it was snoring. So I just left him, and I put my briefcase in the study, took my coat off. And came downstairs again. But Gemma [our dog] wouldn’t come down with me, as she stayed upstairs.                                 

So I think I put the kettle on, made a cup of tea. I then went back upstairs and walked into the study, and John was still snoring away, so I thought I’d wake him up and make a joke about it. But I couldn’t wake him.

This little bit I’m not sure how I feel about this, maybe it’s my background training, well I don’t know but my mind suddenly went very cold, very clinical, and suddenly it wasn’t John there on the bed. It was somebody and there was something wrong. He had a pulse, he was breathing a bit heavily, that’s why I thought it was snoring, slight amount of spit at the side of his mouth.

So I moved him into the recovery position, phoned for an ambulance straightaway. And I told them I couldn’t wake him, and he said an ambulance would be with you very shortly. “Had I put him in the recovery position?” “Yes.” “Did he have a pulse?” “Yes.” And all the questions.                   

I then phoned Catherine [my wife] and told her what had happened. I then went downstairs, next door and asked them to look after Gemma, which they did. And in a matter of minutes the ambulance came.

The medics came up and did a quick check, checked the eyes. I don’t know what the results of that was, but they checked the eyes. One of them said to me, “Do you know if your son does drugs?” And I remember thinking at the time, I’d bet my life that he did not do drugs, but I wasn’t prepared to bet his. So I said, “No, not as far as I know. I doubt it, but I can’t give you a guarantee.” So they said, “Fine.” They took him downstairs.        

Now up to then I think he’d been playing, maybe he’s just exhausted. But I didn’t know why. I think, I didn’t know what to think at that time. I was just not sure what was happening.                   

They took him into the ambulance and asked me to stay outside. I remember Catherine arrived and, as she said, and the doctor came out and he looked as though it wasn’t good. And he said they were going to take him to hospital. Would one of us care to go with him? And I thought well, I don’t know what’s happening so I thought I’d better go and Catherine could follow. So we went off into the ambulance.
 

 

Martin had always been fit and healthy. Out of the blue, he collapsed at two in the morning and...

Martin had always been fit and healthy. Out of the blue, he collapsed at two in the morning and...

Age at interview: 51
Sex: Female
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It was August 2003 and my son, Martin, was 16 years old. He’d just left school and was waiting to enrol in the local college. And he was perfectly healthy; he’d always been a perfectly healthy boy. No major illnesses, no time off school. He was a boy with a capital B.

It was a Wednesday evening and he went to bed as normal, seemingly perfectly alright, and around about 2 o’clock in the morning I heard an almighty thump coming from his bedroom. And he slept in bunk beds at the time and I thought he’d fallen out of bed. And then I heard more bumpings and bangings and I sat up in bed and said, “Are you alright Martin?” And with that he appeared in our bedroom doorway and literally collapsed in front of me.                                   

I couldn’t rouse him, and realised that it was clearly something serious. So I rang for an ambulance. The ambulance took us to our local hospital. At this point there was only myself and Martin in the house. My oldest son was staying at his girlfriend’s and my husband was away on business.  

             
Martin was always fit and healthy, and this came completely out of the blue?


It did, it came absolutely completely out of the blue. He’d never had any ailments beforehand; you know he’d just been a really healthy boy. We did find out afterwards that it was actually a congenital condition. He suffered from a condition called an arteriovenous malformation of the brain. Which is a congenital condition, but not something we knew anything at all about.

There were no side effects, no symptoms, no warning of this. We were told that it would have been like a twig snapping, that the bleed would have been so catastrophic that it would literally have just been a very sudden snap. One minute he was fine, the next minute he was in a deep coma.
 

 

Linda found her husband, John, collapsed at home. The ambulance arrived quickly. She praised the...

Linda found her husband, John, collapsed at home. The ambulance arrived quickly. She praised the...

Age at interview: 48
Sex: Female
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For us it was something that happened totally unexpectedly. [My son] and I were coming home for me to drop him off at home before I went off to a friend’s to do a job for her. And we found John [my husband] unconscious in the hallway.

So we had no warning, no nothing. And things really unfold from there basically. [My son] ran to a neighbour, I dialled 999, you know and it literally just, things just took off from there and we originally, John was admitted to [name of] hospital, which is the local hospital for us, who were brilliant in every sense.      

They obviously cared for him, and started to establish what had happened and actually it transpired that he’d had an aneurysm in the base of his brain, or base of his neck and this had ruptured or whatever happens in these situations. And that had led to two major brain haemorrhages, the like of which it was probably very unlikely he would survive from. But obviously there’s always hope and we were in [the local] hospital for some hours.                                

                          
So you rang an ambulance? Did that all happen quickly, they came quickly?
                                 
Very quickly, yeah. Their response, in fact the operator on the telephone, my neighbour had arrived as I was talking to the operator on the telephone. She was talking us through getting him in the recovery position.                             

They sent a quick response car, which was the first paramedic to arrive, and then a full sort of ambulance arrived after that. But they were brilliant, the medical care, not just to John but also to [my son] and I, was absolutely second to none.                       

People, these paramedics had their job to do. They were, obviously their priority was discovering what had happened to John and to get him into the ambulance and whatever else they needed to do. But during that time they were keeping me as well informed as they possibly could, telling me what it could be.

Obviously they didn’t know and they explained that they were getting him to hospital, where they’d run tests. They’d started establishing what it wasn’t and what it could be.

But I can remember being treated like a human being who, in fairness, was not their priority, and they kept me up to date with everything both in the house and then when we went to [hospital name], there was a young doctor who basically was delivering me the news that he thought that it was highly unlikely John would survive what had happened.              
 

One man, Rick, had been playing football, as he usually did on a Sunday, when his wife, Liz, received a call from the team manager to say that he’d been admitted to hospital. Like other people we spoke with, Liz did not think it would be anything serious.
 

Liz went to the local hospital with her brother-in-law. They both assumed that Rick would have a...

Liz went to the local hospital with her brother-in-law. They both assumed that Rick would have a...

Age at interview: 46
Sex: Female
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Rick went off to play football on a Sunday morning, like he normally does. It was the week before we were due on holiday. The kids were excited because Auntie [name] and Uncle [name] were moving in over the road, so they were helping. I had put Sunday dinner on as normal. Rick went off to play football. So normal Sunday routine really.                               

And then I put dinner on, went over to [sister’s name] to help there because they were coming for dinner, and we were helping them move in. And I just nipped back because she needed some window cleaner. And I just nipped back and that was, as I went in the front door, the telephone was going. So I ran and picked the telephone up and it was Rick’s manager, football manager. And he just said, “Liz, Rick’s not very well. He’s collapsed on the football pitch. We’ve tried to pick him up. We don’t know what’s going on, but can you get yourself to [name of] hospital.”    

So I wasn’t really worried. I thought he’d broke his leg or something because he was on a football pitch. And that’s the only information I had.

So my brother in law came with me and [name] looked after the kids, that’s my sister. And off I went to [name of] hospital.

Got to [name of] Hospital, just went up to the counter and said, “My name’s Liz [surname]. I have been informed my husband has been brought here, can you tell me anything.” And the lady said, “What’s your husband’s name?” So I said, “It’s Rick [surname].” And she said, “If you’ll just bear with me one minute, I’ll get someone to come and see you.”                                    
                              
So at the time, ‘Casualty’ [TV hospital drama] was quite big, and I did say to my brother in law, “If they come back and say you’ve got to go to the relative’s room, I’m just going to do one.” And he just said, “You’re alright. He’s probably broke his leg or he’s done something like that.” And, you know, it was exactly what I was thinking.
 

Some people said their loved one had had a major road traffic accident causing injuries from which they had, sadly, not survived.
 

Eunice’s daughter, Kirstie, had a car accident on her way to work. She was airlifted to hospital,...

Eunice’s daughter, Kirstie, had a car accident on her way to work. She was airlifted to hospital,...

Age at interview: 55
Sex: Female
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Kirstie had a car accident on the M20 on December 5th, 2006. She was travelling to work with her partner in the car. It was just one of those freak accidents. Kirstie was in the wrong place at the wrong time. Nobody else was involved. Her car spun and a barrier went through the roof of her car. Kirstie was the only one injured. [Kirstie’s partner] got out, no injuries at all. She was airlifted by [place name] Air Ambulance to a hospital in [place name], where she stayed for two days.                    

When we arrived at the hospital we were told from the beginning that Kirstie’s injuries were really major and nobody expected her to live. She had extensive brain damage. And at the [local] hospital they took her into surgery, mainly just to, because she had a quite an extensive gap in her head, they took her into theatre just to sew it up. And then took her into the intensive care where, this all happened on the Tuesday morning.  
 

A few people said that their relative had been unwell for some time, but they were shocked to hear that they had suddenly got much worse and would not survive.
 

Frank’s wife, Jen, hadn’t been given a diagnosis but had back pain and arthritis for a year when...

Frank’s wife, Jen, hadn’t been given a diagnosis but had back pain and arthritis for a year when...

Age at interview: 62
Sex: Male
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Jen’s problems started about a year before she finally passed. She found it difficult to walk up hills, but we all put this down to the fact that she had arthritis and a bad back from being a nurse.

Then, as the year progressed, she started to fall over. And that became a bit more worrying. One particular morning she spent nearly two hours on the bedroom floor before, I’d kept trying to phone her and there was no answer. And unfortunately my daughter had had to go out first thing, but as soon as she came back I phoned her and said, “Look go in.” And she found Jen on the floor.                           

But again the GP just, it’s such a difficult illness to diagnose, Motor Neurone, that it was put down to other things. She had various scans and tests, and they even sent her to see a psychiatrist at one stage. And it came to a head at the end of November 2008, and she’d had minor breathing problems, but nothing much. But this particular Sunday she was really struggling to breathe. And my son had popped in for a visit. And we kept saying to her, “No, there’s nothing wrong with you. It’s all in the mind.” Because that’s what we all thought at that.

Anyway, the situation got that bad that in the end my son said, “Look, I’ll take you to hospital.” And he took her off to A&E [Accident and Emergency] and they checked her out and found that her oxygen stats were quite low. So they kept her in that night just for observation. Did some tests the following day, which were inconclusive. And they recommended that she actually go through with the [city hospital]. But, as so often the case, there was no bed available. So they moved her into CCU [Critical care Unit] just to keep an eye on her at the [local hospital].   
 

Andrea’s brother, Paul, had had health problems since the age of 11. When he aspirated, however, she hoped he would recover as he had done in the past. Aspiration is when solids or liquids that should be swallowed into the stomach are instead breathed into the respiratory system, or when substances from the outside environment are accidentally breathed into the lungs.
 

Paul had aspirated before so, when it happened again a year later, Andrea wanted doctors to give...

Paul had aspirated before so, when it happened again a year later, Andrea wanted doctors to give...

Age at interview: 54
Sex: Female
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He [Paul] aspirated actually in his sleep. That left him in intensive care in November 2008. He couldn’t sit himself up and he vomited in his sleep and that’s what he aspirated on.                      

They found him actually dead in bed and they resuscitated him. But they did say to us at that point, because of his other underlying health problems, if he couldn’t breathe on his own then they wouldn’t do anything to resuscitate him. But he did manage to come round after that, although it did leave him then unable to walk, unable to use his hands, because of the extra brain damage that had been caused. And he was on a pureed diet after that, and he could no longer drink liquids. He had to have thickened liquids, stage two thickened liquids. He came out of hospital after that aspiration incident. He went back into his nursing home, where he was extremely well cared for.          

And then exactly a year, more or less to the day, later he aspirated again. This time while he was being fed his breakfast and we were called to come to the hospital because the nursing home said it was sending him straight to [hospital name], go there. We were due to actually pick him up to bring him to my house for his birthday, it was his birthday on the Tuesday, and this was the Sunday.                      

And we got to the hospital and he was unconscious and they were doing a brain scan on him. They actually told us at that point that they didn’t think he would be able to hold his own airway, and they were going to remove the breathing tube. I asked them if they would wait and give his body a chance to recover, like had happened the year before, because I said he did it last time and he might be able to do it again. So they agreed to that.                               

And apparently during that week, they did try while he was intensive care to remove the tube and found he couldn’t breathe for himself. But they said that they’d give him another 48 hours. 
 

Haydn’s teenage son had severe depression and had been taking illegal drugs as well as prescribed medications. Sadly, he died of a drug overdose at the age of eighteen.
 

Haydn’s son, William, admitted himself into hospital because of his depression. He was later...

Haydn’s son, William, admitted himself into hospital because of his depression. He was later...

Age at interview: 52
Sex: Male
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Around William’s death, we got a dreaded phone call on a Monday morning, or the week before that I actually had a word with William to take his medication. And he wasn’t taking medication and I’d spent two or three hours sending him text messages, being on the phone to him, trying to tell him that he should take his medication. So somehow I got through to him.             

                 
But he was in and out of, he’d admitted himself into hospital on the Friday because he’d become an outpatient of the [name] Ward in the [hospital name], so he was an outpatient there. And on the Monday morning, after William had admitted himself on the Friday, and the Monday morning then he would, I got the dreaded phone call saying that he was in intensive care. Oh what did they actually say, they said that your son’s been sedated, he’s unconscious in his bed on the Monday morning and he’s in intensive care.

Will had taken an overdose of drugs had he? 

        
Yeah. In Will’s system, I’m going to be absolutely blunt with you, they found cannabis, they found an E, methadone, medication, there was cocaine they’d found in there, right concoction so… That’s the way it is, methadone, cocaine, cannabis, he had an ecstasy in there as well. There was quite a lot. Quite a lot in there, it was a concoction they said would kill anybody.
 

Some people did not at first realise just how serious their loved one’s condition or injuries were. Very quickly, a seemingly normal day turned into a very abnormal one.
 

Lesley was having a day out with her daughter and grandchildren. They had to take another route...

Lesley was having a day out with her daughter and grandchildren. They had to take another route...

Age at interview: 58
Sex: Female
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My son was returning from his girlfriend’s house on 18th July, 1997, and it was the middle of the morning, a sunny day. And he was riding a motorbike and he was involved in an incident with a car. He came off of his motor bike and hit the car and, in the process of it, somehow his crash hat came off. And he sustained very severe head injuries.                            

At the time all this was going on, I was actually at home with my daughter, who was staying with me for a break with her twin babies. And we were going out for the day. And we got ourselves together and got into the car and drove up the road and there was a diversion. And the police were in the road saying there’d been an accident and we would have to go another way, which we did.                         

And we were out all day, and I got home at about 6.30 in the evening. And as we drove up my husband came out of the house, looking quite grim, and just saying, “I’m so, so sorry.” And I thought, “You know, what’s he going on about?” And he said, “It’s Kristian, he’s had an accident.” And I didn’t for one moment think that it was anything really serious. I just thought he’d probably been taken off to hospital with a broken limb or... And my concern was obviously to get my daughter and the babies into the house and get them settled and then get off to the hospital as quickly as possible.                      

And at that point he’d been taken to the [hospital name], so it was a bit of a drive for us. My husband had also informed Kristian’s father, and he was going to meet us up there. And on the way up [name], my husband, was, he was sort of filling in the details for me, that Kristian had had this accident and he’d been taken to the local hospital and they’d assessed him and felt that he’d got a very severe head injury and... I was still; I couldn’t take on board that it could be really serious. Or maybe I just didn’t want to believe it could be. 
 

Sandra, a nursing sister, did suspect that her daughter, Rachel, had had a brain haemorrhage. Sandra’s mum had died of a brain haemorrhage when she was 17 and Rachel had similar symptoms. As her mother, though, Sandra never gave up hoping she’d pull through.
 

Sandra knew Rachel was seriously ill but Craig didn’t realise until later. They felt the doctors...

Sandra knew Rachel was seriously ill but Craig didn’t realise until later. They felt the doctors...

Age at interview: 44
Sex: Male
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Sandra' She was 11 years old at the time. It was her last day in school. The night before she’d asked if she could stay with her Gran because, unfortunately, I was working in the morning. My husband was on the nightshift and my son was, he was in secondary school and he was to go to school. So she wanted a long lie. She didn’t want to get up, she wouldn’t, and her Gran pampered her every night. So they had a girls’ night, so this was her idea.                        

I used my mobile phone for my alarm clock. So my mobile phone went at half five in the morning and I’d set it for six. And I’d looked at it, and it said Mum’s phone on it. And I just heard my mother-in-law screaming that there was a problem with Rachel. She couldn’t get her awakened.

So I ran out, jumped in the car and my mother in law just stays up the road. And my mum had died of a brain haemorrhage when I was 17, and then when I looked at Rachel I knew there and then, being a nurse myself, that’s exactly what was going on with her.         
               
We called the ambulance crew, who were fantastic and came and they kind of take over and they got her down. And we were taken to the children’s hospital.   

In my heart of hearts I kind of knew there was something serious going on, I could see in the background what was happening but, as a parent, you know,       

Craig' You’re still hoping aren’t you?                   

Sandra' Yeah.                                  

Craig' I mean I took, I went up to my mum’s, and then I went down to get to my son and took him up to my mum’s. And I took her bag up with her nightie and toothbrush, because although, as Sandra said, “Look it’s her brain, something’s wrong.” I thought well she’s taken an epileptic fit. I didn’t for the life of me start to think how serious it was.

I knew it was, I wasn’t out there, it wasn’t kind of an ordinary thing to happen but I knew, I didn’t appreciate how serious it was. It wasn’t until you started to see consultants and people turning up to work at that time of the morning with jeans and a t-shirt and a pair of trainers on that you know that it’s a serious state because these guys don’t get called out as a matter of routine. But they fought like mad to try and save her.     
 

Most of the people we interviewed were impressed by the care their loved one had received from the ambulance team and the emergency staff at hospital (see At the hospital).

Last reviewed May 2016.
  
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