Interview 04

Age at interview: 46

Brief Outline: Had bowel complications and septicaemia. Was in intensive care for nearly 5 weeks. Spent 1 week in a High Dependency Unit and was then discharged.

Background: Occupation: patient and partner are civil servants. Marital status: living together. Number of children: 3. Ethnic background: White British.

She now appreciates what's important to her in life and wants to enjoy it more.

Patient' I do think it has definitely changed me where before people would say you know everybody has tragedy and everybody has awful things in their life. But some people will say oh you know my cushion covers don't match I'm so stressed, I'm so stressed. I am less tolerant with people like that. I would say to somebody like that now you need to get some perspective where, and I need to take my own advice and I think I did in terms of when I get a bit down, there were people who didn't come out of intensive care. There was the lady who was next to me who lost, who had both her legs amputated and I thought I imagined that and [my partner] said no. And I'm like when I went back to the hospital and I saw the girl who had, you know a dead pretty girl who'd had the trache scar and it was, it was more recent than mine and she had that look of fear in her eyes and I wanted to get hold of her and say to her it's going to get better you know. And when people sort of, you know in work and you get an email, so and so has missed this deadline for this very important meeting I think oh it isn't that important, the world keeps turning and you know and there are very, very important things but it's not if you've missed an email. 

Partner' We haven't changed things dramatically, we haven't taken up bungee jumping or anything like that. 

Patient' No  

Partner' But whereas we would weigh things up, should we or shouldn't, where may be in the past we'd have said oh well we can't really afford that, now we'll say oh blow it, we'll go for that and go sort of the other way a little bit. And I'm making an effort not to be wound up by small things like if the girls haven't made their beds you know so what, try and not let little things bother me any more and enjoy things and enjoy life a bit more and appreciate what we've got while we've got it. 

His fears were unfounded and he was reassured to find that all the nurses in ICU were excellent.

Partner' What I would say, one thing I would say about the ICU staff, the first nurse that we met came into the waiting room and told us [my partner] was in a bad way and we should go down and see her. She looked after [my partner] for more or less the first week after that and then all of a sudden she said "Well I won't be in now, I've come to the end of my rota sort of thing, I'm not in for three or four days," which terrified me. I thought, because we'd really put a lot of trust in this girl and she was fabulous, she really looked after her. And I was petrified that whoever came on wouldn't be as good or you know wasn't going to give her the same sort of care or attention or not let us be around as much. But after the first nurse came on, and there was a couple of male nurses as well who were equally as fabulous, and every one of them who came and looked after her was absolutely tremendous. So I didn't have any fear about, if you do get an attachment to a certain nurse, don't worry that another nurse is going to come that's as good because every one of the staff, we must've had a dozen different nurses over the time, and every one of them was absolutely fabulous, really made us feel confident that she was going to get through, whereas I know it's the doctor's job to give you the whole truth. But they were intent on telling us worst-case scenarios. The nurses all kept us up beat and every one of them was fabulous in the care that they gave.  

Seeing the same technician on her second visit made her more relaxed about the tests.

What happened in the follow up appointment when you went to the hospital?  

Patient' Basically I meet with my consultant, talk through all the treatments that I had, he asks me how I feel emotionally and they send me for breathing tests. And that was funny because at the three-month stage the breathing tests were awful, they were really quite traumatic because I developed claustrophobia and it is, they put a plug on your nose and they put like a thing in your mouth. So you're collecting a lot of saliva, you can't breath through your nose and thankfully again the guy who was doing the breathing exercises was really understanding and he was letting me take my time because at one point, and I'm not, I'm usually dead obedient, even if I'm in pain or something. Before I went in intensive care I put up with pain but because I was getting claustrophobic I took it out my mouth and said "Look I'm really getting claustrophobic here," and he said to me "That's perfectly normal, we'll take a break."  

And then when I went at the six month stage it was the same bloke which was great because he remembered me and he said "You know you're doing much better in terms of you're not, nowhere near as nervous," and we were having a bit of a laugh and a joke.

She felt agitated, confused and thought she was on a plane (she had sepsis).

Patient' Apparently I was very agitated, even though I was sedated, I mean and you'll know more about it than I do because I don't remember anything of the sedation. I remember, I knew something was wrong when I was sedated but I didn't quite know what it was and I knew, I could feel, I could hear noises and I could feel warm and I could feel cold because I thought for some reason I thought I was in an airport and I thought it was Christmas, because Christmas I associate with a happy time and I did think that just, again I'm really pleased it's quite common I thought I'd been a victim of a sex crime and apparently what we've talked about, me and the doctors, we think it was because of the personal care you know, touching me in really intimate places. And I'm a very private person that way so they think that was the link and that made sense. 

And also I could hear, I thought it was a plane, it was like a whoosh, whoosh, whoosh sound and apparently that was the ventilator. And it just, it was so great when I woke up and it wasn't right away but I started to say well this is what I felt, did that happen? And they were saying the whoosh, whoosh, whoosh sound, that could've been your ventilator.
 

He stayed at the hospital day and night when his partner was first ill, and felt frightened.

Partner' Basically I stayed in the hospital. I went into work about, it was the Tuesday night when [my partner] went, so early hours of Wednesday morning, I went into work Wednesday morning just to explain the situation, told them I wouldn't be back until she was better and then I went back to the hospital and it was a case of, I mean the girls are what 17 and 15 and so they're more or less capable of looking after themselves, so I just stayed at the hospital 24/7, coming home for an hour to get showered, checking the girls were okay. The family was brilliant, was popping in with meals for the girls to make sure they had stuff to eat, coming and feeding me in the hospital as well. But basically it was just literally a beside vigil wasn't it? 

For how long?

Well it was three weeks, till she woke up. So I was there every day apart from an hour every day in the morning, I was there 24 hours a day. Slept in a room upstairs in the hospital when it was available. When it wasn't available I slept at the bedside in the chair.

I was trying to be strong but there was times when I just I remember one day being with my mum and I was telling her I just felt so frightened, I was really frightened. I just didn't think she was going to pull through. I just felt I couldn't see it while I was there what I was going to do. But on the whole I think when she was ill I was just sort of quiet and kept to myself, the others were chatting and that but I just, I couldn't small talk. I couldn't indulge sort of thing when she was really ill. It was just, I was just losing myself in my thoughts sort of thing and waiting and hoping.

At the time she worried about having her tracheostomy removed, but now the scar reminds her of...

Patient' The minute they did the trachy and that's when I, the recovery started really wasn't it because they were waiting for, the blood wasn't clotting properly so they couldn't do the trachy till, and I know Professor [name], mine's a little scar with two like marks and he said to me "I'm sorry about that, I usually do a neater job but we were in a bit of a hurry." And I really, I know some people who've been in intensive care who really don't like the trachy scar and they're really self conscious about it. But I've got over that haven't I and when I'm stressed I touch my trachy scar and I laugh which is a big move on for me because I do take myself too seriously [laughs] sometimes. And I do, it's sort of I'm a bit proud of that, I think well that's what got me back you know. And when I get daft emails or somebody says you know oh I'm so stressed my cushion covers don't match I laugh you know which is good for me because I wasn't like that before was I?

Partner' No.  

When did you have the tracheostomy, can you remember when they took it out?  

Patient' They took it out, that was only, it was about a week before I came out of hospital wasn't it?  

Partner' They took it out just before you went down to HDU? 

Patient' No, no it was the day, it was the day after I went to HDU so it was literally about four days before I came out of hospital and that was terrifying, literally terrifying because we talked about it didn't we and the night before they said they were doing it [partner's name] said to me "Please don't be worrying." He said "What's the matter do you think you're going to be gasping for breath?" And I said "I do." 

She asked some of her family not to visit so she could have the energy to do her physiotherapy.

Patient' Everybody was so relieved that I was well, you know, I was alive, which I didn't realise because I didn't know what they'd been through. I was having too many visitors and it's really not like me but I was really quite assertive about it. Because I was having so many visitors, I was too tired to do my physio and I knew that was happening. And it was a really tough decision but I made [my partner] tell my family, and this is my sisters and you know my brother, people I love, my daughters that I love so much, but I wanted to get out of hospital more than anything. So I stopped the visitors coming didn't I? Which was tough for me, tough for them and tough for [my partner]. 

Using bedpans was humiliating but this motivated her to recover and become independent again.

Patient' I mean one of the big, big things for me, and I don't know whether this is true for other people, the bedpans were just, it was just total humiliation. And I mean the nurses were as kind as they could be but the big driver for me was to work with the physio, to get myself out of bed so that I could go to the loo by myself. And the other thing was the physio, because I had a lung problem, I was doing a lot of breathing exercises and I was really obedient about doing my breathing exercises because the breathing exercises helped me come off the antibiotics so that stopped me having an upset tummy. So that meant it was less embarrassing to have to be asking for bad pans every five minutes. Which I suppose sounds a bit like you know all my family were worrying about whether I was going to live or die but I was worried about the humiliation of going on a bed pan [laughs].  

Partner' That was partly because you hadn't realised how ill you'd been as well. Your first thing was waking up in the bed, people having to help you go to the loo which, why is this happening? You didn't have any idea of how, what we'd been stood there for four weeks waiting for you to wake up.

She was discharged because she could walk and her partner could look after her at home.

Yes. So did you move to HDU, you were in ICU for what, three or four weeks?  

Patient' It was about four, no it was about four or five weeks and then I went to HDU just for a week and then I was discharged from there which I thought, I was a hell of a success story [laughs] because there were concerns, particularly because my mobility still wasn't very good and you know for health and safety reasons the nurses were taking me to the loo and waiting outside and I couldn't 

In a wheelchair? 

Patient' No I was walking but that was their aim because they thought I was going onto a ward and they were saying your experience on a ward would be, because it was one to one nursing and then it was, I had a nurse, you know a nurse between two of us and they said you know we need to get you up and moving so you can go to the loo unaided and stuff like that. But because of the risk of infection and the fact we had, [my partner] was going to stay at home and we had a downstairs loo, I got discharged quite quickly really.  

Partner' Because she'd done everything else sort in of within a week, initially she couldn't lift her glass or a plastic glass, within two days of being in HDU she'd moved onto a China cup and we was, which seems silly little things. But for us they were, you know she was in tears and I was when she was told me "I'm onto a China cup, lifting that and then you know obviously feeding herself and she'd made ten yards across the ward with a Zimmer, ten yards by herself and then to the loo and back. All within a week she said, like she worked so hard, she was having extra physio sessions, she got it back. I mean I came rushing in to see her, she'd say "No the physio is here, you'll have to go and wait for another hour," so I'd go out and wait because that's what she wanted and she was determined to use all the time she could to get out as quickly as she could. So by the time she came home it was just a strength issue really wasn't it? 

He didn't know how much to tell his partner in case it worried her and hindered her recovery.

Partner' Well when she first woke up, like she said, she didn't know what had happened and we didn't know whether we should say how ill she'd been because whether psychologically it might you know affect her and make her less positive about getting better so we were saying she'd been very ill but didn't go into great detail. Whether that was the right thing to do I'm not sure or whether we should have told her straight away I don't know but I think one of the nurses actually told her when we weren't there how ill she had been, and she'd been critical and that. So that was really sort of taken out of our hands really wasn't it? 

Patient' But she did that because I was, she felt, and you know you can only go with what the healthcare professionals tell you, she felt I was pushing myself too hard because you know I literally, I can imagine I was a bit of a pain really because things like they were saying we're going to sit you out which must be a medical term but it means sitting me in a chair, but they said I could go outside and my impatience to go outside. You know it was probably only a couple of hours but I was harassing this poor nurse. 

She felt worried about catching an infection that might take her into hospital again.

Patient' But it was weird, it was a mixed blessing really because I was desperate to get out of hospital because I'd never been ill. I had no idea how weak I would feel because I was in this cosseted environment where I had one to one nursing, which was fabulous you know and I was desperate to get out of the hospital wasn't I? But when I came home, I sort of came home with a bang didn't I. I was really, really nervy. I've got two cats, I was terrified of the cats you know. They said I had to be careful with my immune system. I just, I really was really nervy. And my daughter still says that I was really quite, I was really angry, I didn't, you know I wasn't sort of blaming anyone but I don't know who I wanted to be angry at. But I was angry [laughs] at everyone wasn't I? I was really, really difficult to live with, really difficult.  

Partner' You were worried, she was worried about anything, you know any germs in the air or catching any, like I say, hairs off the cat. You know she wanted to make sure everything was, well nothing was...

Patient' I think it was because once I woke up in intensive care and realised the seriousness of it and the doctors and nurses on intensive care were really vigilant about washing their hands, you know all the sort of clinical procedures you know. When I came home and they said my immune system was low, I was really panicky. 
 

She often felt angry and frustrated because she wanted to make the most of life but, physically,...

Patient' I am finding I'm still very, you know seven months on now, I'm still very tired. And I find I get really quite angry because I think it's so frustrating because you know you've over come all this with the help of everybody and then you're sort of, if I have a day where I go out and do normal things I then really have to got to rest. And then there's a thing that I keep saying don't I, you feel like you've got to make every second count, every second, and then your body is saying that you've got to rest so you've been resting for months and months and months and then the days, you resent it and you get quite angry and take it, I mean I was saying to you [partner] wasn't I for some reason I was really angry with [my partner], really angry [laughs]. 

And my daughter commented she said, and even this was only a couple of days ago so it's seven months on, she said "You seem to be really angry, there's like this residual anger about something and what is it?" And I really don't know. And it's not all the time but I do get quite angry.
 

She felt reassured when she discussed her feelings with a nurse and learnt that how she felt was...

Patient' But the physical side of it, I was really, really tired. I couldn't manage across, sort of up and down the stairs once a day would completely wipe me out. And I'm used to being quite active and I couldn't get my head around the fact that my body was saying you couldn't do it really. And then if I got over tired I got really, really emotional didn't I, crying and bad tempered. But as I've recovered, as I got better I took my, you know it took me that six months, I got really, it was a bit like a roller coaster ride. I kept, and there are still days even, what are we six, seven months on now, yeah I just couldn't see the point of anything. And where I'm quite an optimistic person, I was having to really look for, you know it sounds dead cheesy, but the joy in things, where normally I'd sort of, "isn't it a lovely day" and friends would say "Oh you know doesn't the garden look lovely?" and in my mind I was thinking "Well what's the point of it, we're all going to die anyway?" 

And I needed to speak to, I went back and spoke to the nurse consultant on ICU and she explained, and I only saw her the once but she explained it's perfectly normal. And that helped, once she said to me, "Loads of people feel like that when they come out of intensive care and you need to be kind and give yourself a bit of time, it will pass." I mean I still have my days but it's not like it was you know sort of three months ago where I literally was turning everything that was positive into a negative. But I wasn't telling anybody, I was sort of, well I was telling you [partner] wasn't I but when I went back to intensive care I talked about it to [the nurse], it sort of made me realise it was normal.