Lesley - Interview 19

Age at interview: 58
Brief Outline: Lesley's son, Kristian, sadly died after a road accident in 1997, aged 21. Kristian gave the 'gift of life' to five people. Lesley would like to have annual updates on their welfare but has heard nothing for over thirteen years.
Background: Lesley is married and has an adult daughter. She runs a Bed and Breakfast. Ethnic background / nationality' White British.

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In 1997, Lesley’s son, Kristian, died after having a road traffic accident, aged 21. Kristian was driving his motorcycle home one Friday morning when the accident happened. Lesley was on her way out to spend the day with her daughter and grandchildren. They were in the traffic that was diverted away from the accident area but did not know, at this point, that Kristian had been involved in this accident. They carried on their day as normal and did not return home until 6'30pm that evening. Back at home, Lesley was greeted by her very distressed husband, who informed her that Kristian had been in a serious accident.

Lesley and her husband went straight to the hospital. Kristian’s condition was worse than they had imagined. He was in a coma, had suffered a severe head injury, and it was possible that he might not survive. This was shocking news, difficult to take in or believe.

Throughout that weekend, friends and family spent a lot of time by Kristian’s bedside, talking to him and hoping he would recover. On the Sunday evening, shortly after returning home to try and rest, Lesley received a phone call to say that Kristian’s condition had changed. The blood pressure in his head had increased and he was dying.

Lesley immediately returned to the hospital and stayed with Kristian, talking to him all night. The following day, doctors carried out brain stem tests and confirmed that Kristian had died. It was at this point they discussed organ donation with a specialist nurse [coordinator]. Lesley and Kristian’s father consented, a decision she felt was made easier because they had discussed organ donation some years earlier.

The transplant coordinator took a lot of time to explain everything to them and made herself available for further questions. Lesley recalled how, at the time, it was very difficult to take everything in because of the trauma. They ended up speaking with the transplant coordinator on three or four occasions before the Tuesday evening, when the operation took place.

Lesley explained how important it was for her to see Kristian’s body after surgery, as this helped her to accept his death. This was a very distressing experience but something she felt she needed to do. Lesley said they then left the hospital feeling ‘absolutely lost and desolate’ because they were given no further information and felt they had no one to turn to.

Two months later, Lesley received news from the transplant coordinator that Kristian’s organs had gone to five different recipients. Six months later, she received another letter updating her on their progress. She also received a letter from the recipient of Kristian’s lungs, which she said was ‘absolutely wonderful’. After this, however, Lesley heard nothing more from the transplant coordinator, though would value hearing about the recipients’ welfare on an annual basis.

After Kristian’s death, Lesley felt unable to contact the transplant coordinator, though she had questions, as she did not want to take up her time. Lesley became very depressed, described ‘going on autopilot’, and felt she had no one to turn to.

Lesley later found out about a charity called CRUSE that offers free, confidential help to bereaved people. Through the charity, a counsellor visited her at home once a week and this was a tremendous support. Lesley is now involved in a charity herself, called ‘Brake’, that campaigns to stop avoidable road traffic accidents and supports bereaved families.

 

Lesley and Kristian's father had discussed organ donation many years ago. Because they'd talked...

Lesley and Kristian's father had discussed organ donation many years ago. Because they'd talked...

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The day before we had all started talking about the fact that things hadn’t looked good and we had talked about organ donation. It was something that we’d all talked about as a family, and it had started many years ago with Anthony Nolan and his story.

And my first husband and I at the time were very taken with this story. We were just drawn into it, and just felt so incredibly sorry for this family. And we both joined the register and so, in many ways, that made it easier for us to sort of talk about it at this point.

And I think it was probably on the Saturday, we just had decided that if the worst came to the worst then we would donate Kristian’s organs.

So on the Monday, we stayed with him all through Sunday night, and on Monday the consultant spoke with us and said that there would be a series of tests to determine whether Kristian was brain dead. And those tests would be carried out the following day. And they suggested that we went home and I think it was probably the following day when we went back we spoke with the transplant coordinator.
 

Seeing her son after surgery was traumatic but Lesley never regretted it. It was horrible seeing...

Seeing her son after surgery was traumatic but Lesley never regretted it. It was horrible seeing...

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It was on the Tuesday evening that the operation went ahead. And Kristian was taken down for his operation at about six o’clock and, at about five o’clock, we all went in and really said our goodbyes. And we expressed a wish to see him after the operation. Because I think we all needed in our minds to confirm that he had died. Because he looked so well in himself up until really the end. It was very hard to take on board that he had died because he’d still got a rosy glow to his skin. He was still very warm and all the rest of it. And so we requested that we see his body afterwards and that in itself was incredibly traumatic, although I don’t regret it for a moment.

It was unfortunate for us that we went back to the hospital at about midnight. And we had to wait for about another hour before we could see him. And we were told that he would be in the chapel of rest. We’d been told that earlier in the evening. But we were taken, run round to the back of the hospital, which in the dark it all looked very dingy and gloomy and horrible. And there was like a boiler room there. I seem to remember all this noise coming out of this one area. And we were taken into what was almost like a store room. And that shocked me greatly, I think all of us really. I mean they’d done the best that they could do; we were never given an explanation as to why he hadn’t been in the chapel of rest.

And they’d put a few candles around and he just looked very peaceful, but where he’d been put was very traumatic for us. And it was so important to see him at that point. I think I touched him and I don’t know why I should think that, but I was still expecting him to be slightly warm and he wasn’t. He was stone cold. Now that was a huge shock. And very distressing. But I don’t regret having done that.
 

Lesley was upset to see that her son was lying in a wet bed. She was also distressed to be told...

Lesley was upset to see that her son was lying in a wet bed. She was also distressed to be told...

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I think there were a few things in the hospital. The facilities in the hospital for us as relatives at the time were very poor, which made things very difficult. After we had made our intentions clear, that we wanted Kristian’s organs to be donated, we went onto the ward and saw Kristian.

And I just sat by the side of his bed and just put my hand on the bed and on his hand, and his bed was soaking wet. And I think that his catheter had worked its way loose and he was just in a soaking wet bed. And at the time that was incredibly distressing that... and I just remember thinking at the time, oh they’ve got what they want and they don’t care about him anymore.

And that was quite difficult and, on the evening that we went to say our goodbyes to him, and the nurses pulled the curtains around the bed so that we could be private. And it was so, so distressing and we were just absolutely in floods of tears. And this person came in through the curtains and she said, “I’m sorry,” she said, “You’ll have to move out of there.” She said, “I’m doing an x-ray on the patient next door and you can’t remain in here.” And I just did, I had hold of my son and I just didn’t want to leave him. But we had to leave.

And I walked out into the main ward almost hysterical, crying and everybody was going about their business. The ward was busy, and I was just standing in the middle of this ward absolutely breaking my heart. And that again was another element to the whole thing that was incredibly distressing that, I mean obviously they had a job to do but one would think that it could have been dealt with more sensitively.

We did actually make a complaint and I think it was the ward manager or the hospital, now I can’t remember who this lady was, but she came and spoke with us and took on board all of what we were saying. And apologised for the sort of distress that she had caused.
 

Lesley had several questions she would have liked to talk to medical staff about but felt too...

Lesley had several questions she would have liked to talk to medical staff about but felt too...

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I think as far as the organ donation is concerned, for us, there could have been along the way a lot more information. [Name], the co-ordinator [specialist nurse], she said that if at anytime we wanted to speak with her, we could. But somehow you get locked into this world of desolation and shock. You don’t function for, you’re almost like a zombie, you can’t function properly at all. And to actually make that effort to pick up the phone, I don’t know, I think because you feel these people, their time is so precious, you don’t feel you want to be bothering them.

And maybe it could have, there were lots of questions down the line that we felt we wanted to ask, or myself personally I wanted to ask, but couldn’t. You know things go through your mind afterwards about the actual operation and things that maybe we were told but I couldn’t remember, and I just needed confirmation. Little worries that go through your mind about the operation.

I have absolutely no doubt that it is carried out with the greatest respect for the donor, but still there are questions that I would have liked to have asked and just didn’t feel that there was really anybody there.
 

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...

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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. 
 

Lesley had two updates from the nurse and a letter from a recipient. The letter was ‘worth all...

Lesley had two updates from the nurse and a letter from a recipient. The letter was ‘worth all...

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The transplant co-ordinator [specialist nurse] had said to us that we would hear some information on the recipients of the donation. She said we would hear from time to time. She would write to us and let us know.

We received a letter about two weeks later, telling us where Kristian’s organs had gone, to whom they had gone. And there were five recipients. And then we had another letter, I think it was about six months after that, just updating us on how these people were doing.

And we didn’t hear again. And I think we all felt we needed more, even if it was just once a year, to know how these people were doing. It just seemed very important. We didn’t particularly want to know who they were and I understand that you can’t, you know, that’s not possible anyway. But we knew the age of the people, whether they were male or female and all of that just seemed very important.

However, on the final letter from the co-ordinator she enclosed another letter from one of the recipients, a gentleman called [name], who had received Kristian’s lungs. And that letter was just absolutely wonderful. And, every now and again, I get it out and read it. And it was just so, so important to receive that. And this man had just gone through his life really, and how he had suffered from ill health from a baby, all through his life. And the huge difference that it had made to him, to receive this transplant. And that was just worth all the money in the world, it really was.

But still, even now, thirteen years on, I have this desire to know how they’re doing. You know, if they are still alive. And if they are still enjoying a quality of life. It just, I don’t know why it’s important but it is.

So I feel that they could have done more. I understand these people are incredibly busy and their time is very precious, but equally so I think, you know, we gave a great gift. Kristian gave a great gift and just to have that little bit more information would go a long way.
 

Counselling helped Lesley get rid of anger she had towards the other driver involved in her son's...

Counselling helped Lesley get rid of anger she had towards the other driver involved in her son's...

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Eventually I found CRUSE bereavement counselling and this fabulous young lady came out to see me. And she herself had had experience of bereavement, and so that helped a lot because you felt this person had some understanding of what was going on in your mind.

And I perhaps didn’t realise that I had a lot of anger issues with the whole thing surrounding Kristian’s death and a lot of anger at the other driver. There were question marks over really how the whole accident had happened and I felt that the other driver could have made some admission as to, “Yeah, well perhaps I did do that, perhaps I did start to move. And that’s what made Kristian slam his brakes on.” That was the opinion of what might have happened.

But she unfortunately wouldn’t admit to anything at all and I was quite angry at her. I wasn’t holding her responsible because I think that there was an element of doubt as to, I think Kristian had had some part to play in it. I think maybe he was travelling too fast.

But I just felt I needed her to say, “Yeah, I think maybe I did start to move forward or,” just a little admission that there was, somehow she had been involved. And with the counselling, this young lady really helped me to get rid of this anger. And she came once a week for, to my home, for several weeks and it could have even been several months. And she said, “I’ll keep coming for as long as you need me.” And I think it was my lifeline really. It helped tremendously.

And very, very slowly, you do get back into normal life. But I would probably say that the state of shock lasted for, I would think, a couple of years before I felt I was coming out of that cocoon really of that you seem to find yourself in. And I think that so many things go through your mind over the years and there are so many “What ifs? What maybes? What might have beens?” And nobody can answer a lot of those questions.

And you are able to get on with your life and you are able to function again. And there is life on the other side,
 

Lesley's son's donation helped five people have a better quality of life. She has never regretted...

Lesley's son's donation helped five people have a better quality of life. She has never regretted...

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I think for Kristian the biggest gift are his organs and the fact that he has helped five people extend their lives, however long that might be. And I would do it all again. I wouldn’t hesitate. I think it’s so, it’s so very, very important.

There are so many people on the waiting list for transplant and when you hear some of their stories it’s just heart wrenching. You know, people that have lived all of their lives in and out of hospital, suffering horrendous health problems. And you know in our family we, touch wood, have all been blessed with good health. And for a lot of people who have, never have health issues they don’t really ever think about people that have got these health issues. And it’s not until it touches your life that you realise how many people are affected.

And, oh we’ve always been great believers in organ donation, and I think if people can, if people can talk about it and get as much information as they can and get their names onto a register, which is so important. And if you have to make that decision, if you’re forearmed, forearmed? You know if you’ve got all the information there, it makes the decision really so much easier. And we felt in control of that.

I think you know, if we hadn’t have talked about it and we were approached about organ donation, it would have been far more difficult for us. And, I mean people can go and get hold of a lot more information, it helps tremendously.