Mike

Age at interview: 69

Brief Outline: Mike’s heart failure was diagnosed 9 years ago after a cardiac arrest. As a result his life changed dramatically—he was banned from driving, which lost him his job and forced him to move house. He has an ICD which has shocked his heart back to life several times. He leads a busy life, has a positive attitude and likes meeting and helping others with heart failure.

Background: Mike is a retired social researcher. He is married with three adult children. Ethnic background: White Welsh.

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Mike collapsed from a cardiac arrest when he was working away from home. An ambulance crew restarted his heart and took him to hospital, from where he was sent home but told not to drive, so his son came to pick him up. Later he saw his GP, who referred him to a cardiologist who did an echocardiogram and told him he had heart failure due to dilated cardiomyopathy, probably caused by a virus. Learning that he had heart failure terrified him because he thought it meant his heart had failed completely. He found it hard to believe he was seriously ill because he felt no pain. He was immediately transferred to another hospital where they fitted an ICD (implanted cardiac device). He was frightened at first by having an ICD and had repeated blackouts. He was taken back into hospital and observed for a week but the professionals could not identify the cause of the blackouts. They sent a psychologist to speak to him, who suggested that when he felt a blackout coming on he should sit still and breathe deeply, since then he has had no more blackouts.

As a result of his diagnosis Mike was banned from driving, which meant he lost his job and began to feel depressed. Enrolling on the Expert Patients Programme helped him to come to terms with his condition. Mike’s wife didn’t drive and as there was no public transport close to where they lived, the Social Services found them a council bungalow in another area that was on a bus route. However, they still missed the car as trips to hospital appointments, for example, could take much longer by public transport than they would by car. Mike’s ICD has activated to shock his heart several times over the years. He has recently had a new one implanted, which is monitored by a device in his bedroom at night and sends the results by wi-fi to the hospital every couple of months. As a result of this change he is now allowed to drive again. 

Mike takes eight medicines each day including beta blockers, diuretics, blood pressure tablets and statins. His condition is stable and well managed by his medicines and his ICD. Mike has check-ups every 6 months with his GP and also with a specialist nurse at the hospital, who he can call at any time. In the early days of his heart condition his blood pressure was fluctuating, so the GP loaned him a blood pressure machine and asked him to measure it daily. Once it stabilized he had to return the machine but he has since bought his own and every couple of weeks he checks his own blood pressure himself if he is feeling a bit wobbly. On the instructions of a nurse, he also weighs himself daily and adjusts the dose of his diuretic tablets accordingly. His ICD is checked at the hospital annually. He feels well looked after and safe as a result. He is happy with the amount of information he is given and will ask the professionals if he wants more. He feels involved in decisions about his care and appreciates that his consultant takes an interest in his wife’s wellbeing as well as his own. He is soon going to be tested for sleep apnoea because he sometimes stops breathing at night despite being propped up on three pillows.

Mike and his wife lead a busy life despite his heart condition: they look after their grandchildren, are involved in church activities and raising funds for heart charities. However, Mike tires easily and finds heavy gardening or looking after his granddaughter tiring. He can walk several hundred yards on level ground but not up hills as he gets breathless. He accepts that there is no cure for his condition and has a positive attitude to life. Although his illness was dramatic and changed his life instantly, he feels that good things have also come of it. He started a support group for people with ICDs and they are campaigning for the term ‘heart failure’ to be replaced by something less frightening. He is a ‘buddy’ to newly diagnosed patients who need someone to talk to. He also meets other heart failure patients through attending cardiac rehabilitation classes. He finds it reassuring that he is in frequent contact with heart failure professionals through attending the classes.

Mike’s ICD shocked him 4 times, resulting in a 9 year driving ban; after having a new ICD and remote monitoring device he is thrilled to be driving again

The hardest part then was that I couldn’t drive, so I lost my job because I couldn’t drive, because my job was based on driving, because I was doing interviews all over Wales. We had a problem then with the house that we were living in, it was up top of a mountain, there was no buses up there. My wife can’t drive, so we, so we spoke to the social, so the social services came to see us and said you need to move to a bungalow. I said, well, I, I was 58 at the time, I thought ‘Well I can’t get a mortgage for a bungalow now’, so they said, “We’ll get you a council bungalow”, which they did within, within five weeks. And we moved to the bungalow and, but I didn’t drive then ‘cos about 18 months later, ‘cos you’re banned, ‘cos you’re banned from driving for six months, but I, but I was having so many problems that, that the consultant said “Mike, I don’t think driving is a good idea”. So I didn’t drive. But then two years on my defib fired four times, they are pretty horrendous things they are. It’s generally a ban for a long time for that because you, because you are, you know ‘cos you have so many shocks, so I didn’t drive for nine years. 

Then what happened two years ago I had a new defib put in, which is wi-fi, which is particularly spectacular, and I’ve got a monitor now which is, which is in the bedroom, called [name], that monitors me every night. It scans me when I’m sleeping and it sends the results to [city]. So if there’s a problem with my heart it, it’s picked up straight away. 

So how do you feel about having this monitoring you every day?

Great, marvellous. ‘Cos I’m back driving now because of that. So I if, you know I’m quite happy with it, you know, it’s the best thing to have happened to me to be honest, you know. 

Mike said he would phone his specialist nurse if he was having problems breathing or walking.

So what would make you seek help now for your heart condition?

If I had, if I was having problems perhaps breathing, or walking, I would phone straight away, you know, I would, like, wait, I, perhaps I’d wait a couple of days but I wouldn’t wait any longer, you know. I’d phone straightaway, you know.

Who would you phone?

I’d phone the cardiac nurse, you know. If I had a problem with my defib then I’d phone the other nurse, you know. But I’d phone the cardiac nurse. If I couldn’t get hold of her I’d phone the GP, you know, and have a chat with him, you know. 

A nurse had advised Mike to adjust his diuretic dose according to his weight each day.

And I also I take diuretics, I take three a day. ‘Cos I get up in the morning, I weigh, and then I adjust my diuretics to my weight. So I do that myself, you know, because, you know, ‘cos a nurse had told me what to do, so I like to feel, you know, help yourself a bit.

So do you do that every day?

Every day yeah, yeah. 

And did you do that off your own bat or did they ask you to do it?

No they asked me to do that, yeah.

Mike would want to know the reason for any change to his monitoring regimen and have the option to disagree; more frequent check-ups would suggest he was getting worse.

So how would you feel if the health professionals wanted to change the way they were monitoring your condition?

I think I’d question it. I wouldn’t, I wouldn’t say, “Oh alright”. I’d want to know why, you know, like why they’re going to change it.  You know, and if they said, “Blah, blah, blah”, and I didn’t agree with it I would say. I would say, you know, I don’t agree with it, you know, but at the moment they haven’t, you know, so… 

What if they wanted to see you even more often?

Well, well so be it. You know, it wouldn’t bother me, you know.

Or less often?

Perhaps that would bother me a little bit. But more often wouldn’t really bother me, you know. The only feeling I would have if they wanted to see me more often, am I getting worse? Is my health getting worse? You know, that’s, you know, that’s a query that that I would have then, you know. 

Mike was devastated by being unable to drive; he used buses to get around and journeys to hospital took far longer than they would by car.

Oh it was dreadful. Oh. I thought the world had ended ‘cos I’ve always driven. I like driving, I used to drive, our daughter lived in Germany for years, so I used to drive to Germany regularly. And when I couldn’t drive, the first three, six months, and all the ads on the telly seemed to be for cars [laughs]. And I couldn’t drive. And it was horrendous, it was really horrendous.

How did you get about?

Well I’ve got children who, you know, who are very good. But they’ve got their own lives to lead and they’ve got work, you know. And then, and then we moved down here, which was easier then ‘cos there’s buses to town, you can walk to the town, you know. My wife bought one of those little shopping trolleys you pull behind you and, you know, but and we did that for nine years, you know, and it was difficult, you know, it was, some days it was great but other days if we were doing a job and you wanted something, it was like, it was epic, you know. I’m a classic case. If, if I had an appointment in, in hospital, in the local hospital I catch the bus. Now the buses only run every hour, so if we’ve got an appointment at, say, half past ten, the half past nine bus is too late, so it was the half past eight. Then if you miss the bus home… So you’re looking at about four hours for a journey that would take you 20 minutes, you know. And then when I went to [city] then, you know, to have my checks and that, you know, before monitoring, it, it, well it was all day, it was unbelievable, you know, it’s… I think, I think, I think modern living is built for cars, you know. But, but we survived, you know, and then I’ve been back, I’m back driving now and it’s great, you know. 

Was there a hospital transport system you could have used?

Oh well that is dreadful. “We’ll pick you up at 9”, and you’re like at half past ten and they still haven’t turned up, you know. So I didn’t bother with that, I thought I wouldn’t bother with that, you know.

Mike set up a support group for people with ICDs; he also gives one-to-one support to people newly fitted with an ICD.

I’m particularly positive as a person, I do feel that although it was, it was, it was a dramatic, you know, thing, things have bounced, have actually come from it that, that wouldn’t have happened. So that’s how I feel, I feel at the moment, you know, so…

What kind of things?

Well, firstly that we started a group for people with ICDs, because when I was, I think the problem I had first was that I didn’t have anybody to talk to. I could talk to the doctors and the nurses but they hadn’t got a defib. So we had, I had a chat with one of the doctors and she said to me, “What about starting a group?” I said, “That’s a good idea”. So we started a group six years ago. Didn’t know what we was doing (laughs), as you do. And the group has got bigger and bigger and bigger now, you know. We’ve got a website now, we’ve got about 150 members, something like that. And we meet every three months and we get speakers like a cardiologists, we get dietitians, pharmacists, we’ve had a Buddhist monk come to talk to us about, about relaxing. 

And, and then we’ve got, ah, we’ve got a buddy system where we, [city name] I shouldn’t say [city name] you know, the hospital will phone me up and say, “Can you go and talk to so-and-so, they’ve just had a defib put in and they’re absolutely terrified”. So my wife and myself go along and, and talk to these people about, you know, positive things. ‘Cos I think it’s, it’s difficult sometimes. Well it’s, personally I think it’s more difficult, it’s more difficult for the partner really because it’s frightening isn’t it? You know, so we go along and talk to these people and it’s, and it seems to be working, you know, and so we’ve done particularly well as a group, you know.