Vivienne

Age at interview: 61

Age at diagnosis: 60

Brief Outline:

Diagnosed with heart failure in 2010. She has and ICD (Implantable Cardioverter Defibrillator) and Vivienne said that it took several months before she noticed any benefits. Her condition has improved but she feels anxious and recognises that her life has changed since diagnosis.

Background:

Retired deputy matron in a children’s home; two daughters, divorced. Ethnic background: White British.

More about me...

Almost a year ago Vivienne woke up gasping for air and was taken to A&E; she had a chest x-ray and other tests but doctors couldn’t see anything wrong with her. They concluded that she had probably suffered a panic attack and sent her home. Her condition didn’t improve and she went to see her GP who happens to be a cardiologist. He recognised heart failure and referred her to a consultant.

The consultant started her on medications that alleviated her symptoms of breathlessness and fatigue almost immediately. The consultant also thought that she would benefit from having an Implantable Cardioverter Defibrillator (ICD) put in to monitor her heart rhythm. The ICD needed readjusting twice but afterwards it started to work just fine. 

It took time for Vivienne to notice the benefits of having an ICD. When she first went home after the surgery she felt very anxious and unable to do much. She lives on her own and her breathing frightened her so much so that sometimes she thought that she would go to sleep and never wake up. She would become breathless easily, and everyday activities like going up and down the stairs, having a shower would leave her gasping for air. She was unable to do any housework and relied very much for help on her two grown up daughters. She said ‘everything was an effort’. She has also noted that her voice has changed since developing the heart condition.

Lack of activity has meant that she has gained three stone in weight in the last year but rather than becoming depress about it she decided to join a local well-being programme. Her doctor thinks it is a good idea. The programme includes advice on diet and a gentle exercise programme and she has already lost some weight. 

Vivienne was retired when she felt ill so her condition hasn’t caused any significant financial impact. But one of her daughters is no longer able to work full-time as Vivienne is no longer able to look after her grandchildren as she used to.  

According to her consultant, since having the ICD her condition has improved by eighteen per cent. Vivienne feels much better for having the defibrillator but indicated that her everyday life has changed and she is anxious about the future. 

Vivienne was misdiagnosed at A&E but she knew there was something wrong with her and went to see her GP who is also a cardiologist.

I’ve been poorly for some time now for over a year. And in September last year, that was when I first took bad. It was in the middle of the night and I was in bed and all of a sudden I woke up and sat up, quickly and couldn’t get by breath whatsoever, was gasping for breath and luckily my daughter was in the bedroom next door but I couldn’t shout, call for her so I tried to get up to go and get her and I could hardly walk. When she saw the state of me, she, although she doesn’t drive, she’s only a learning driver, she came down and put me in the car and took me down to [name] Hospital. When I went to [name] Hospital I was seen by the doctor but I was sent home. They, they thought it, well I think it was a chest x-ray they gave me, they took some other tests but it was a chest x-ray they gave me and they said they couldn’t find anything wrong with me and they thought it was panic attacks mainly and they sent me home. 

This happened on about three occasions, each time it was in the middle of the night, waking up and couldn’t breathe and going down to the hospital again and every time I was sent home. I knew there was something wrong with me, I knew my own body and I just couldn’t believe the way I felt. Sometimes I could walk and talk alright even and other times I couldn’t. Even my voice had changed which still to this day, it has. I was so confused and feeling so ill that I wanted to go and have a second opinion so I phoned up my doctor’s surgery and I asked to see my own doctor, Dr [name], who actually apart from being a doctor, works at the hospital in heart, in things to do with the heart. He saw me and when he called my name, just walking from the waiting room to going to his room and sit down, I was gasping for breath and he looked at me and he asked me what was wrong and when I told him, he said, “Well I’m going to do this test, I think I know what it could be but we have to wait until we see what the test is.” I can’t remember the name of the test but I know if I was alright, the results should have come back about a hundred and mine came at one thousand, four hundred and something. And I told Dr [name] the way I was feeling and that I’d been sent home from the hospital and I said, “Dr [name], I know my own body, I know there’s something very, very wrong. Please can you find out what’s wrong and fix it for me.” 

Anyway he found out what was wrong with me and he had me into hospital where I was under Dr [name], [name of hospital] Hospital, and they then put me on tablets. Dr [name] first put me on the tablets and the tablets were so, so good. It was unbelievable how much that they helped me. Then eventually I got put on more different types of tablets, I’m on the highest dose now of all the tablets that I can go on.

After receiving her diagnosis, Vivienne asked her GP and consultant how long she had to live.

He was very nice and he came in and closed the curtains and he, he just told me in a nice way that I had chronic heart failure. Do you know, I can’t really remember but I do know he was very nice.

How did you feel at that moment? Were you scared?

Yes I was. I couldn’t believe actually being told by your doctor that, that I’d had, you know, that I had this. I just thought it was something else that I’d picked up a bug or there was something wrong, I didn’t realise it was as serious as what, as what it was. He also told me that it was terminal and I think that’s what got me the most because I didn’t cry and I was brave, my daughter was there with me but I was gobsmacked to think that the one that, I had.

And although I know this operation has helped me, I know it won’t make me better but I’d rather be told something that was the truth than not to be told. A terminal illness, that I wasn’t going to be able to get better.

Did you feel easy or less frightened after he talked to you or not?

Well no I was still in shock because I’d just been told and then the first thing I thought was after he’d gone out from behind the, away from the curtains and that and I was left on my own with my daughter, the first thing I thought was, “Oh I wonder how long I’ve got.”

Have you asked your doctor about that?

Yes and I’ve been told they can’t tell , some people can last for twenty years, it could be ten to twenty years, they don’t know. Every person, it’s different with…

But actually I think well, with what’s wrong with me and even after the operation, if I’ve improved because they know how much my heart is pumping and working properly, I think, surely they must have an idea dealing with this every day with patients, they must have some idea although they can’t say exactly, nobody can say but I think they must have some idea and if they did, I’d rather know because, to get my house put in order. You know, if I was told you’ve got twenty years unless you get knocked down by a car, or it could happen anytime from three years to twenty years, well I’d just rather know because with me living on my own and having two daughters, there would be lots of things I’d have to talk to them about which because I look so well and everything, I think half the time they don’t maybe; my eldest daughter, they both know what’s wrong with me but maybe they don’t realise some things, you know, so one way or another you know I, I would just, if the doctor’s had any idea, I would be the first to say, “Well I’d rather know than not know.” Not to worry but just to put things in order.

Have you talked to your GP about it or not?

Yes I have and Dr [name of GP] said to me, he’ll, he said, “Well everybody is different.” You know, you could be twenty years, you could go on to live a long and fruitful life.

Yeah, so …

So the doctor at the hospital and Dr [name of consultant] has said the same and I know nobody can say but if they had any idea, you know, I think it would be nice for, well in my case, not nice but I would rather know.

Vivienne was scared of having the ICD inserted under local anaesthetic, so the cardiologist agreed for her to have it done under general anaesthetic.

So what happened, can you tell me about how the procedure is done, the ICD, are you given local anesthetics’.

Well I have a problem. I asked specifically when I found out that they could do it when you were awake, I thought, “No way Jose, no way” [laughs]. So I asked specifically could I be put to sleep and there was no problem. The, the doctor at [name]’s Hospital said yes and he would, he would do it. He was actually going to go on to other things in the heart and somebody else I think was going to do mine but when he knew I wanted to be put to sleep, he said he would do it.

I couldn’t believe that I’d had it done and apart from feeling groggy a bit, I felt OK. Till I saw it in the mirror and I did say to the doctor that he ought to take up sewing classes [laughs]. It was all jagged but he, when I went to visit him afterwards, he explained the reason for that, you know, the way they had to take the thread back and so.

How long do you think it took for the wound to heal? A few weeks?

No, quite some time. Even when the stitches got out, two were left in. They didn’t sort of dissolve as fast as I was told they were but I can’t remember but I know I remember thinking at the time they should have dissolved by now and that, you know?

Hm mm

No it, it took a while for it to heal.

The ICD setting was initially fast and had to be adjusted, but before that Vivienne was experiencing what she describes as a ‘baby kicking’ sensation.

You said that to start with they had to sort of kind of regulate it because it was not doing its job properly?

After I had it put in, yes, I came home, the, they put it to what they thought it should be and when I came home and it was worse if I laid down, it was bumping, it was like, if you were expecting a baby and you could see the baby kicking, well that, that’s how it felt to me as though it was jumping all the time.

So it was too fast?

Yes and when I laid down, it got worse but I didn’t say anything about it, I just waited till the next time I had an appointment and I told them and they, the girls, whoever was doing it, they did it. I was a bit disappointed there though, because I was asking questions and they weren’t giving me the answers. The, the two girls at [name of hospital] that were altering it. They said I had to wait till I saw the doctor and he would, he, he would explain things to me. You know I thought maybe they could of but, however, it still wasn’t quite right but they did, they did a good job compared to what to had it had been jumping about because it would only, I expect some movement but I mean one time I was sat at the table eating and it just jumped that much. It made me jump and everybody else jump and I, then I felt, I felt funny and I had to leave the table you know. But after they altered it, it was a lot better and then finally in [name of hospital] they put it on the last one’s been perfect. 

So how did they regulate it?

With a machine and in [name of hospital] they, they stopped it so even, they stopped the machine in here it must have been to see what it was like and then they turned it on again.

Now if I understood correctly, the original programme or the original setting they put in for the ICD device wasn’t sort of, wasn’t the correct one? 

Didn’t suit me.

Didn’t suit you? OK

No, it, it jumped too much and sometimes made me jump.

OK. Have they reprogrammed it, once or twice?

Twice.

Twice? OK

And now it’s perfect.

OK. In which way? How, how different?

I can’t really tell a difference much except that the odd flutter occasionally.

OK

I can feel it, you know. Every day I get these flutters as I call them but it’s alright, you know?

Hm mm, OK

But it was very uncomfortable at first. Sometimes I would, “Oh” you know. 

It was like a shock?

Yes, yeah.

Vivienne talks about how she feels since having the ICD procedure but says it took time for her to notice any benefits.

I had that [implantable cardioverter defibrillator (ICD)] put in and I was treated fantastic at [name of hospital] Hospital and when I came home I couldn’t tell any difference at all even after a week . When I came home it, it, it wasn’t all that painful when I came out of hospital but it was still difficult for me to get around but it, it wasn’t really all that painful but I couldn’t tell any difference and, and I thought it hadn’t worked. I’d been told that 40% of people it didn’t work for and the rest it did and I thought I was one of the 40%. And I was told, “Well its early days yet, just wait. You know, it, it, it may do and it may not.” And it took quite a few months and then all of a sudden I, I just seemed to feel as though I could do more, I could walk further and I was over the moon, I was feeling better. It just seemed to happen all of a sudden but it took quite a few months, didn’t happen straight away at all. I even got my daughter to take off the raised toilet seat in the toilet because I could sit on the toilet normally instead of having to sit on a raised seat and just even getting away with that made me feel better. And I feel much better for having the operation.

She [consultant] just told me how the operation had gone and that it, since the operation it is improved 13% which is very good so that means the operation for me was a success. I know it was anyway because I feel much better and everything but 13% it’s improved and that’s for definite.

And how did you feel about that?

I’ve over the moon, I’m over the moon, you know. I thought at first that it hadn’t worked at all but it was a slow process, much longer than I thought. I thought after the operation I would feel better within a couple of weeks, it wasn’t like that, it took, it took months.

Month?

Months

OK

Before I felt the benefit of feeling better

OK because they had to re-programme and make changes? 

Mm

OK, OK. 

Took me longer as well to feel better, you know, the, they said it could take, I think it took about three months for me to sort of feel anywhere near normal after the operation.

OK and what about your breathlessness. Have you noticed any difference in that?

Compared at first how I felt at first, I’m 90% better. I know I’m, I’m not normal the way I would have been but my breathing’s a lot better but every time I do anything strenuous or even get very tired. Well then that’s when I get breathless and I know it seems to calm down when I sit down and rest. And tiredness seems to come over me very quick. I don’t, I don’t have a catnap during the day or anything like that but it seems as though six o’clock on an evening, it’s like a wave that comes over me. I literally am like this, that’s it, that’s me done for the day now. You know it’s just something that comes over me. And I get on the couch, I put my feet up and just watch the television till bedtime.

Any other symptoms?

Apart from the bloatedness and the weight, the psoriasis, no I’ve had no swellings or anything like that. Oh my voice, yeah, my voice changed.

Your voice changed?

It’s weird that. Sometimes it’s really bad; you’d think that I had something wrong with me. So much so there’s a friend of mine, she said, “Oh Vivienne,” she said, “your voice, can you not talk properly?” I said, “I can, I can’t, it’s just the way I am today.” Some days it’s worse than others so what it is that I’ve got, it’s changed me voice, I don’t know [coughs].

Vivienne explains how her Medtronic machine is monitored from the hospital via a telephone connection 24/7.

Medtronic?

Medtronic Care Link

OK

So 

It’s a machine?

It’s a machine. That plugs into the socket of the phone, where your phone goes, it plugs into there and then you turn it on. I must admit the, a DVD came with it and I haven’t looked at that yet but I was explained that as long as I am in the are… that picks up the signal of this implantation (ICD). And it is monitored down at the hospital in [town] 24 hours and if something goes wrong they’ll know about it and they’ll phone me up

OK to check that you’re OK?

Yes.

Vivienne often had shocks or palpitations before from her ICD until she had the setting adjusted. Each time she felt unwell but didn’t need to call emergency services.

No I’d just get the palpitation.

Or lightheaded or, or dizzy or?

No but that time I was at the table, I got the, I got the palpitations and it made me feel sick I felt bad straight away. I thought, “Oh I feel sick,” and I had to leave the table and stand at the back door and I wanted fresh air

OK. Did it sort of go away?

Pretty quick yeah.

Pretty quickly? OK

Yes it did and it only ever happened as bad as that the once.

The once?

Yeah, the other times, especially when I would go to lay down, it would be, like I said, a bit uncomfortable but it was like a baby kicking you, you know.

Vivienne’s feelings towards her GP/heart specialists are of gratitude and complete trust.

I will be seeing Dr [name of GP] providing there’s no problems every three months. He’s been absolutely a rock for me. He’s been marvellous. He’s answered all my questions, he’s put me at ease, he diagnosed me straight away and he was there for me when nobody else was.

This is your GP?

Yes so I’m, I’m grateful. If it wasn’t for him, I don’t think I’d be here, I think with the doctors not picking it [heart failure] up at the hospital, you know. So I’m really grateful to him.

Vivienne experiences bad, exhausting days less often than she did before her ICD was fitted.

On bad days I feel pretty bad but on good days like today, you know, I feel good, I just wish all my days were good days. I wouldn’t like to, I wouldn’t like it to start going worse again and me feeling the way I did before but I just get so annoyed when I can’t do things, you know. I’ve aged as well, I’ve must have aged about ten years and not only do I think that seeing photos of myself a year ago, can’t believe it and my daughter’s even said, you know, that I have yeah. But just, I was looking at photos last week and I just could not believe the way I’ve really, really aged and since my illness. 

Have you…

And I look at people, a lady across the road and she’s the same age as me and I see her going out wearing her heels and doing this that and the other and I think, “Oh god, if I hadn’t been poorly I’d be like that, I’d be,” you know, [laughs] you know I wish sometimes.

How often do you have those bad days now since your..?

Not as often as, every day was bad so now I can’t even say once a week, just occasionally, I know.

How do you feel when you have those bad days?

I feel exhausted when I get up on a morning when I wake my, when, when I open my eyes, just feel exhausted and don’t want to do anything [I: OK] But I usually make myself extremely tired and a bit down and…

OK. So it’s the tiredness that gets you?

Yeah even, but even on a good day I have a job coming down stairs on a morning, I have to come down like a baby, you know what I mean? Things like that, trivial things but nevertheless, different to the way I used to be.

Vivienne says that on a bad day she feels exhausted and worries about many things including dying in her sleep.

I’m frightened about the future. Because I live on my own, I often think one night I don’t, I just felt bad but it was when there was a bug going around and I just thought I wasn’t going to wake up, I thought I was going to go to sleep and not wake up. But that’s because, that was a one off but I do feel frightened about the future. I do think sometimes will I go to bed and not wake up. There’s so many things I’m worried about to do with my girls really. Like for example, I own this house and I’ve got, I think, less than five thousand I owe on it, it’s something like three thousand and when I die, my youngest girl is going to come and live here, sell her house and give half the proceeds to her sister so they both get, you know, an equal share but I’m thinking, I don’t want any friction between them or anything like that although this has been agreed and I’m thinking, should she come and move in with me now and live now and sort things out like with the house, so many things, you know, I worry about. How long am I going to feel like this for, will I get worse, when will I get worse, what will I be like when I’m worse, when I die, will I die of a heart attack or will I die of fluid on me lungs or, with my illness, how do you, when you die how do you die with it, you know.

I do worry about, not all the time or anything like that but you know, I might be laid in bed one night and then I’ll be thinking all sorts. Will I be here to see the grandkids, you know, maybe get married or that type of thing.

Vivienne receives disability benefits and uses her money to buy better quality food instead of paying for home help.

Do you receive any incapacity benefit?

I do. I get top mobility so that’s why I have the car outside, first time in my life I’ve had a new car and they have the money every week, the £51 and I get medium disability of £49 a week with that I could have somebody come in, I dare say to clean for me but I don’t. I keep it because it helps me live better from week to week with regards to food and stuff like that.

Where you working before you were diagnosed?

I took early retirement in 1990 but I worked for 23 years in a Children’s Home for County Hall as a Deputy Matron. I worked in the Children’s Home for 23 years, my Mother worked there for 33 years and my daughter worked there until recently when it was closed down. So [laughs], we put a lot of years in.

I can’t get what is it? Carers allowance because somebody is got to be earning less than £100 in the family or something and they’re either making more than that or me grandchildren can’t because they’re at Uni and things like that. But it’s, it’s still a struggle to, you know, to try and keep on top, I have to rely a lot on the girls.

And my eldest daughter’s aware, you know, of what I’ve got and she helps as much as she can. But you don’t like to keep asking all the time if you need things, well, I don’t like to and I won’t, if I can do it, I’ll do it but you know, with living on me own, there’s a lot of things that I have to have help with.

Yeah. And how, how do you go about sorting that help?

Just asking them. I mean, I’d gotten in the bath one night, I couldn’t get out, you know, [name of daughter] had to help me out and when I get tired, I’ve just got to leave everything and go and lie down. It comes over me more or less straight away. I’ve just got to ask when I need, you know, me floor washing and that, the, the girls will do it. I know I get this £49 a week which I’m so grateful for but it just helps me, you know, getting better, a bit better food or, you know, so and I don’t pay the girls anything. They just do it for me.

Vivienne finds it difficult to accept the uncertainty of her heart failure.

Have you asked your doctor about that?

Yes and I’ve been told they can’t tell , some people can last for twenty years, it could be ten to twenty years, they don’t know. Every person, it’s different with…

Hm mm

But actually I think well, with what’s wrong with me and even after the operation, if I’ve improved because they know how much my heart is pumping and working properly, I think, surely they must have an idea dealing with this every day with patients, they must have some idea although they can’t say exactly, nobody can say but I think they must have some idea and if they did, I’d rather know because, to get my house put in order. You know, if, if I was told you’ve got twenty years unless you get knocked down by a car, or it could happen anytime from three years to twenty years, well I’d just rather know because with me living on my own and having two daughters, there would be lots of things I’d have to talk to them about which because I look so well and everything, I think half the time they don’t maybe; my eldest daughter, they both know what’s wrong with me but maybes the, they don’t realise some things, you know, so one way or another you know I would just, if the doctor’s had any idea, I would be the first to say, “Well I’d rather know.