Interview 01

Age at interview: 41

Brief Outline:

Was admitted to intensive care in 1998 because of a complication during pregnancy, leading to septic shock. Was in ICU for 11 days and in general ward for 2 weeks. Recovered well and has had no further problems related to that illness.

Background:

Occupation: nurse. Marital status: married. Number of children: 1. Ethnic background: White British.

She had heard doctors discuss what was happening to her and saw the shock on the doctor's face...

All throughout my time in Recovery my vision was coming and going, but my hearing was very acute. I was an Intensive Care nurse, I knew what they were talking about. I could hear them saying what my blood pressure was, that it was very low. And at different times throughout I can remember saying, telling, trying to tell them what to do, give me some fluids and get my blood pressure up and there was lots of activity in the room. I could hear drawers being opened and closed and I could hear them looking for things, and I could hear them saying that my oxygen levels were low and my blood pressure was low, that it wouldn't come up. I knew they were putting various lines and drips into me, and I was counting all the fluids that were going in and totalling it all up. So I knew I'd had a few litres of fluid and my blood pressure was still low. 

Then I remember the Consultant coming down from Intensive Care who was on call and I knew who it was, I couldn't see him, but I heard his voice so I knew which Consultant it was and I heard him on the telephone asking for another Consultant to come down.  They didn't even realise that it was me that they were coming to see, when the other Consultant arrived I could see him. My vision had come back at that point, so I could see him and I just remember his face, he was just in total shock and I could see from people's faces in the room that things were getting worse. 

At one point I just could not breathe, I could feel my lungs filling up with fluid and I remember panicking at that stage. Even though people were trying to reassure me all the time, I knew that things were getting worse.  I remember saying to the Consultant Obstetrician at one point, "Have I got septic shock?" And he said, "No, no, no, everything's fine."

She sometimes feared she'd been kidnapped and needed to escape because she drifted between...

And then, from then on I was convinced that I'd been abducted by aliens and I was in some kind of spaceship and it wasn't really my Mum and my husband and my friends and colleagues that were with me. They were aliens and they were impersonating people that I knew. And all I could think of was that I had to go along with it and make them believe that I thought they were those people so that eventually when I was able to escape I could do that. And I think I must have been thinking that for days, but because I was trying to be nice to them they thought that I was just coming round in a normal way and was just a bit subdued, and a bit quiet, and a bit withdrawn. But I was watching everything they did, everybody that came near with a syringe or a drip, or anything, I was convinced that they were going to harm me, or they were going to try and kill me. And it was just very, very strange, I mean I'd worked in Intensive Care for thirteen years and you'd think you have an idea of how patients feel, but really when I look back now you have no idea that patients went through this kind of experience really.

So this must have gone on for about three or four days that I was in this kind of twilight zone, and then gradually things would happen. The nurses would come and take bloods from the drips and things and say, "We're just doing, taking this blood to check your drug levels." Or, "We're just taking this blood to check your oxygen levels and then I'd think, "Well why would aliens want to check my oxygen levels? And why would aliens want to check my drug levels?" And I think I then started, that must have been at a time when I was becoming more orientated myself, when all the drugs were wearing out of my system and everything else. So then I started to think, "Well maybe it's not aliens, maybe I really am in the Intensive Care Unit".

And the other thing that was strange was one minute I would remember what had happened and why I was in there, I'd remember about the baby and I'd remember about everything that had happened leading up to me being poorly, but then the next minute I'd be back to thinking that I was in this spaceship, so they were very contradicting thoughts.

Because of her nursing experience, she fully understood what had happened to her and the...

On the Intensive Care Unit I was ventilated and from what I've been told when I was first admitted to the Intensive Care Unit I was on a hundred percent oxygen. I was on maximum ventilation really, they had to put me on pressure controlled ventilation because I had such bad pulmonary oedema. And they said that the pulmonary oedema was just flowing up into the ventilator tubing. I was very hypoxic even on maximum ventilation, on a hundred percent oxygen and they did even consider prone ventilation, which is where they turn you on your tummy. It wasn't as widely used then as it perhaps is now and I think a few different units were trying prone ventilation and others were trying nitric oxide. But we were trying prone ventilation quite often and it tended to either work very well or it didn't work at all, so they did consider that but before I, they got to the stage of actually doing it I did start to improve. My oxygen levels did start to go up so they decided to just hold off. And luckily I didn't need that. 

The staff have told me that when I was admitted I was on dopamine, and adrenaline on quite high doses. I also needed boluses of inotropic support to support my heart and circulation. I was also commenced on haemofiltration because my kidneys had packed in, more or less straightaway. So I was put on to the haemofilter to support my kidneys (and fluid balance) but also to try and filter out the toxins from the sepsis as well. 

She wanted only close family to visit her while she was not looking like herself.

I remember people wanting to come and see me, my friends and their husbands and people like that, and I just couldn't be bothered, couldn't be bothered with people visiting me. Apart from the fact that you don't feel normal, you feel like you don't look normal. So I remember thinking, "I don't want anybody seeing me looking like this.'  

And just going back to something you mentioned earlier. You said that you didn't want too many friends visiting. At what stage did you feel, 'I'm ready to see my friends again'?  

When I started to look a bit more like myself, a bit more normal, and you know, I just looked like me. For the first few weeks I didn't look anything like me, and people, you know, people on the unit used to say, you know, all the time patients come in and relatives say it doesn't look like my relative and you can't appreciate that. But they could from seeing me 'cause they knew what I normally looked like and they say I was nothing like that, I was just blown up with fluid. I was blue I'd D.I.C. because I'd bled into all my tissues and my eyes and so I didn't even resemble anything like me.

She was critically ill in intensive care and finds the anniversary of her illness extremely...

Every year when it's approaching October I start to dread it. My birthday's at the end of September, so every time it's getting towards me birthday I'm always really conscious that it's a few weeks when I have to unlock all these memories of the 23rd of October. And I don't think it's as much as thinking when the day arrives, I don't think I think that's the day I nearly died. I always think that's the day my baby died. And that's why I don't want to unlock it all. 

But it's, you have to do, you have to unlock it and you have to, you know, that day I can't do anything. I can't, I can't work, if I've got to work I have to take it off as a holiday or a day off. I can't you know, go anywhere and do anything nice. That's the day that I just have to spend either on my own or with my husband or with my little boy and we do something together. And then the next day we just get on with our lives. 

She found the care on the ward excellent and felt like she needed to do more for herself once she...

I can't complain about the care that I got at all, it was excellent, even on the wards. You asked for something, they would do it and you'd just have to wait but that's just the ward isn't it? Most wards are like that, they haven't got the staff that they've got on the Intensive Care Unit. They've not got the resources and you haven't got your own nurse. But in a way you need that because you need start to do more for yourself, simple things were hard to do, for example, going to the toilet or having a wash. You realise that you've got to get up and do it yourself, and I'd even have to wait for painkillers. But that's nobody's fault, that's just how it is. 

She was extremely weak and her family worried that if she needed anything during the night, no...

When it came time to go back to the ward, I mean I know in the past, in my experience, patients going to the ward, they go from one extreme to another. And I know relatives find it very hard and that was the case with mine as well. You go from being attached to all kinds of monitors and machines to just being in a side ward, in a ward, where nobody's even observing you. 

And I was changing ward and I was put into a side ward because obviously the ward staff thought I needed privacy but no, very upset and very distraught and I had lots of visitors and other staff and I was put into the side ward. But I couldn't even walk, I couldn't get up and sit in the chair by myself. I could feed myself by that point, but I couldn't get to the toilet, I couldn't stand up, I couldn't get to the sink. If my glass was on a trolley at the bottom of the bed I wouldn't have been able to reach that. So it was quite difficult and my relatives saw this and they knew that I'd gone from being in Intensive Care with my own nurse to suddenly being, alone really. And, you know, they were worried what would happen if I went off in the night, what would happen if nobody could, you know, I couldn't contact anybody so they were worrying about all those kinds of things. And it was quite daunting even for me even though I knew that that would happen, it was still quite daunting and, you know, frightening. And even if you did buzz the nurses, they were obviously busy. They couldn't come as quickly as they could on the Intensive Care Unit, you'd have to wait, which wasn't anybody's fault. But it would have been better if I could have done a bit more for myself.

She was a nurse in the ICU where she was a patient, and asked questions over and over again in...

I think as I became a bit more orientated as well, I sort of started to ask lots of questions, had to know what had happened to me. I had to know everything from who'd been to see me, to what my relatives had been told by the doctors and the nurses, even down to looking at my own charts, just to convince myself how sick I'd been and how bad it was. I needed to know everything in minute detail, who'd been to visit, what they'd said, what I'd looked like, however gruesome it was when they told me I just felt like I had to know. 

I needed to know everything, every minute detail, and I'd ask things not, I remember asking not once but several times because you tend to forget what somebody's told you, so you need them to keep telling you these things. And then there's an element where you think, "Have I got that right? Did I really, did that really happen or have I dreamt it?" 'Cause you still, you kind of like being in a Twilight Zone it's, "Have I dreamt that or did it happen? Or is this real? Or have I imagined it?" So you need telling not once but several times, so I'm sure I mithered people till they were sick to death with me but if I did they never showed it. They always answered everything and, you know, it was always done, you know, they'd sit down, and they'd spend time talking, and they'd listen to me, and they'd answer me and, it didn't matter how many times I asked a question they would always answer it. And that continued even when I'd been discharged.

The follow-up team explained how she might feel over the coming months and a psychologist helped...

So I was home within three weeks. I'd had a chat to a couple of the consultants from the Intensive Care and they already, the hospital I was in already had a follow-up clinic that they'd asked us a few months before and they'd only actually followed a couple of patients up. So they asked me if I'd like to be part of the follow-up clinic which I'm glad I did really. 

As I say they explained how I'd be feeling over the next few weeks, or the next months. I also saw a specialist in Behavioural Medicine who's part of the follow-up team and she was absolutely brilliant. At first I was quite dubious 'cause I thought it would be like counselling and they asked my husband as well, not because, with several reasons, obviously as I was a member of staff on the unit, I'd been a patient on the unit, we'd lost a baby, I'd remembered being resuscitated, my husband had witnessed some of it 'cause it was a few minutes into the resuscitation before they'd realised that he was just stood there in the wings, so he'd witnessed some of that as well. So they thought it would be good for both of us and we were both a bit dubious and a bit sceptical and he declined. He said that he would be fine, and I said, "no I would". I wanted to go ahead and see the specialist, the behavioural specialist, and she was absolutely brilliant. I don't think I could have done it without her and I suppose it was a bit like counselling but it was probably a bit more involved than that.

She wanted to change her appearance, decorate the house and have more quality time, and was...

But I did change. I started, I wanted to change everything. I went out and bought a whole new wardrobe of clothes. I decorated the house from, and it was quite out of character as well, I went from having, you know, say cream walls and pastel colours to painting the walls like orange and bright yellow and doing things that I wouldn't have done before.  

Why did you feel like doing this? 

I don't know. I just, I don't know I just did it. And I had this, I got this thing in my mind that you're only here once and that you never know when things are going to be taken away from you, and there's no pockets in shrouds so you might as well spend your money. There's no point watching your bank balance grow and, so I went a bit daft and [laughs] was booking holidays and changing the house, changing my clothes. I wanted to completely change my hairstyle, just really things that were really out of character for me. I'm one of those people that kind of plods along and I wouldn't say I don't like change but I, you know, to change things for me I'd have to think about things a lot and really convince myself that things were right, whereas I was a lot more spontaneous. And I remember my husband saying, "You're gonna have to stop." [laughs], "You're gonna have to stop this because we're gonna have nothing left." [laughs]. And then you started to think, "Yeah I've done enough now with, I better just calm down a bit." But again when I've told the Psychologist and she again just said, "But you're not the only person who would do something like that, it's quite normal after what you've been through." And so, you know, again I was a bit relieved that I wasn't doing something that was completely, I thought abnormal.

Her experience of intensive care led her and her colleagues to change several things in their...

So everybody learnt something and we decided that we couldn't not do anything about it, that we would have to make some changes as a unit. And it was simple things that I could tell them, it was things like you don't have any conception of time. It could be day, it could be night, it could be the middle of the afternoon, as a patient you don't know, because the lights are on all night, the lights are on all day. There's activity all night and there's activity all day. So I didn't, half the time I didn't know what time it was, so there were clocks placed everywhere where patients could see them. 

Even down to things like bin lids, when people put their foot on the pedal of the bin and the bin crashes down and you're just dropping off to sleep and, you know, you already think you're in a strange environment, that you've been abducted like by aliens and then this thing comes crashing down. So they changed all the bins so that the bin lids came down very slowly and they didn't crash. We did a booklet for patients who were going to be part of the follow-up clinic, which describes the things that they would go through, about the nightmares, about the pains and the aches, and loss of appetite and loss of concentration, all those kind of things. So myself and the follow-up nurse, we did a booklet for patients, the follow-up team has since been further developed. 

The other thing that we changed was we've decided that, I found it quite hard going from the Intensive Care Unit to the ward, so they decided to step patients level of care down, so that some of the monitoring would be reduced gradually before patients went to the ward so that it wouldn't be such a shock to go from one extreme to another.