If someone has heart failure it may be that they are at risk of abnormal heart rhythms that could threaten their life. If that is the case they might be suitable for a particular device called an internal cardioverter defibrillator and it is known as an ICD. That device is fitted under the skin usually around shoulder height.

The device is about the size, slightly larger than a matchbox and has a wire which goes into the heart through a vein underneath the chest wall there and threads into the right side of the heart. If the heart should go into a life-threatening rhythm, an abnormal heart rhythm, then the device will detect that and give a shock. It will deliver a shock into the heart which should reset the rhythm back to normal.

Ok. So that is how an ICD works?

It is. So an ICD will sit in your heart. The detector wire will sit in your heart and will just watch. It does nothing else but watch, see what is going on and will only do something if there is a problem. So if your heart is in a life-threatening rhythm, abnormal rhythm, it will deliver a shock. But it also has the facility to pace the heart as well, just give an electrical impulse that is rapid and above the rate that the person’s own heart is beating at. So if the heart should beat between 60 and 100 beats per minute and the heart suddenly goes into a rhythm where it’s beating at 140 beats per minute then there is a facility called anti-tachycardia pacing which means that the device will give an electrical impulse at more than 140 beats per minute for example and then gradually bring down the rate so that it is bringing the heart back down to a normal rate range.

Shortly after I’d had the device implanted a specialist nurse asked me whether I would be prepared to participate in a research project they had where they were trying to identify who would benefit from ICDs. So they were looking for people who had them fitted and doing a series of tests involving radioactive devices and more scans, this kind of thing. And I agreed to go through that and chatted to various technicians and researchers on this. One technician surprised me when he told me that the ICD I had fitted was worth about £25,000 [laugh]. Which impressed me as against £2,500 for a standard pacemaker. So it really made me realise how important the treatment was. The other thing was that one of the people supervising one of the tests told me that the device had definitely helped me. He could tell from the tests that I was tested when it was working and when it was switched off and this kind of thing. And he said, he confirmed to me that it really was doing me a lot of good.

So for patients who have heart failure when they have had medications to treat that condition and they are at the maximum doses that are suitable for that person and yet they are still symptomatic. They might still be very tired and they still be very breathless. Then there is a particular type of pacemaker which can help in this situation. The name of that is cardiac resynchronisation therapy, CRT is known as. That is a special pacemaker where a small box about the size of a large matchbox is placed in the upper chest under the skin. A wire is fed through a vein into the heart and one wire is fed down to the right side of the heart and another wire is fed to the left side of the heart through a vein. It can help because with heart failure sometimes the heart is not pumping exactly synchronously. Left and right side of the heart are not pumping at exactly the same time. CRT can help because if the box delivers an electrical impulse to right and left sides of the heart at exactly the same moment the left and right side of the heart will beat at exactly the same moment. And so the movement of the heart is normalised and it helps to produce a better push of blood out to the body with each beat. So that device can just be simply a pacemaker in which case it’s known as a CRT-P device or it can also deliver a shock if necessary, if the heart should go into an abnormal heart rhythm, CRT-D.

So if the heart goes into a fast abnormal heart rhythm this device (CRT-D) will detect that and can deliver a shock if necessary or it can pace at a much faster rate, so delivering electrical impulses to make the heart beat at a faster rate than the life-threatening rhythm and then gradually bring the rate down to a normal rate again. So that’s called anti-tachycardia pacing. So a CRT device may be just a pacemaker or it may also contain the potential to deliver a shock in a life-threatening situation as well and that is called CRT-D if defibrillator is part of the function of that device.

But it is important to say that CRT devices in patients with heart failure are only successful in improving symptoms in about two-thirds of cases. So the majority of people do benefit from it but by no means almost everyone. So it is something that would need careful consideration before going ahead.

It was arranged that I would go to the specialist hospital to have the ICD fitted. I went for assessment and they’d settled. So then I went in on the Sunday afternoon. Settled into the ward and on the Monday morning the local specialist nurse came to me and talked me through the process of having the ICD implanted and gave me the opportunity to actually see one and to feel the weight of it. She explained that some patients were not very happy with that but I found it useful to have some indication of what was going to happen and what I would have.

Did you have any questions or any concerns at that point about this new treatment?

No, no concerns really. Possibly I’m a bit naïve that I take what the experts and the specialists say is right. So I went through the procedure. It was installed. Somebody later told me that I was a bit of a bleeder. They had troubles stopping the blood. Nobody told me that in the hospital at that time [laugh]. But it didn’t trouble me and I didn’t really suffer any after, serious after effects from the thing. I knew that I’d be awake when the implant was made, no problem about that and I’d been warned that I would be knocked out when they actually tested it. So when they told me they were just going to give me more drugs I accepted that that was what was happening. So no worries about that at that stage.

But the implant is put under local anaesthetic?

Local anaesthetic, yes.

And then they sedated you?

Just, yes I was sedated later in the process. And it sits just [ah] near my right, left shoulder. I rarely notice it. In the early stages when I lay on my side I knew it was there. Doesn’t worry me at all now I’ve had it for so long.

In the five years you have had it.

Yes five years now, yes.

Yes five years now, yes. And I was told that if the defibrillator ever needed to come in it would, it’s been described as being, kicked by a mule. I’d still like to see the people who actually were kicked by a mule and can say that [ha].

But generally the information I was given was very good, very reassuring, very anxious to know, for me to know what was going to happen and what the effect would be.

Ok and who provided that information?

That was the specialist nurse in particular and she spent, you know, a good half hour or more with me in the morning partly reassuring and partly making sure that I was aware of what was going to happen and what the effect of it would be. So [ah] at that stage that was what happened there.

And the pacemaker, how big is it? Is it like a small

It’s like a big pocket watch only squarish 2 -2½ inches square and probably half an inch or slightly more in width, yes in depth. Do you have any?

How long does the procedure last?

I was told between a half hour and an hour. Obviously I wasn’t awake when they finished [laugh]. So I can’t tell but the other part of the procedure is for the 3 wires on my system to be fed through the veins down into the various parts of the heart.

I was given a sheet of paper, quite a lot of paper in fact telling me what the ICD did, how it worked and that kind of thing. And also a very simple sheet that said that, you know, there was no need to worry about the ICD for any of the normal functions of living. And also advice on what to do if you actually had the defibrillator work and advice for family that if it did work on me because if it goes off I’m likely to collapse. And if I just come round quickly and get up and settle down again don’t worry about it but if it keeps shocking that’s the time to get specialist support.

Have you had any episode of that?

I’ve had nothing for which much thanks.

So did you have any concerns when they suggested for you to have the defibrillator fitted, the ICD?

Yeah because I was in employment and at that time I was getting a bit worried because I was thinking that if I have a defibrillator fitted that they were going to take my driving license away and I could not drive or do anything like that. So I was getting more worried about that. But it overcome that I had to speak to one of the specialists in name Hospital and she suggested, it was nurse name who deals with the defibrillator unit up in name Hospital. She wrote to the DVLA and explained to them that I was sensible and I was, you know, fit to drive. She persuaded them and they had to go through their medical records before they gave me a license to drive again.

Ok so you main concern was to do with work rather than any, sort of you were not concerned about the operation itself or

No because I knew I was in the best hands and I had a lot of backup from the hospital, you know, and I had a very good, you know, nurses and all that who looked after me and that did encourage me to have this thing done. And that did improve me a lot. They gave me a very good support as well, you see.

You needed your driving license for work?

To drive at work and to drive me around as well because I could not depend on anybody, you know. And this was the case that I had to, you know.

You were living alone?

I was living on my own, you see, and it was very, very difficult for me, you see, so that was the thing.

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.

And then when you go in to have it done say it’s like, you know, having the pacemaker put in you go in early in the morning. You don’t eat or drink from midnight that night or you just have water and you’re sedated but you are awake so you do know what’s going on. And you have to lie on your side and they make the incision usually on the top left-hand sort of near your breastbone, really underneath the breastbone with the idea it can go into your muscle near your arm, sort of underneath your arm, so it sort of should be tucked away. And unfortunately they couldn’t get the two leads in first so as, you know, got the third lead in eventually and [ah] when they were putting the box in the, a lot of the analgesic was wearing off so it was quite uncomfortable. So I think that’s why the, my box is a bit more prominent than maybe ideally but hey-ho never mind. And you stay in hospital overnight whereas with the pacemaker you go home that same day, you do stay in just because they have, doing things to your left ventricle they do want to make sure.

So what they do is put you on a, you have a three-lead monitor and a little box so you are in a room with your own loo but you, so you’re not actually strapped to the bed. You don’t have a drip. You can get up and about but you do just have to carry your ECG little box around with you. And then the next day you go down and have a check X-ray and as well go to see the pacemaker. They set you your, the new settings. So they were very, she was very good you know, very, very professional, very kind and you know you feel very, very trusting in their efficiency.

And the surgeon?

Then the surgeon, [ha] the surgeon I do have to say, I could see him looking, talking. And he said, I don’t think this will work’ [sigh]. But anyway hey-ho so I cried then but

The surgeon said that?

Yeah before he put it in that morning, like that, I don’t know if this will work. But whether that’s. And I still, I’m going to see him in January so I will find out why he said that and I’d say, you know, I do feel better for having it in but I’m still not. I wouldn’t say I’ve yet made a full recovery and its three months. But then I was in heart failure for, from November of last year, from November to July and so it’s taken me. Any way I am jumping.

If you tell me about it?

Right. I was being. They told me that well take you in the theatre. You’ll be still awake, you know. And they took me there and they told me they had. I was. Said that, You won’t go to’, you know, They won’t put me to sleep or anything but I will be conscious and they’re talking to me all the time. So one of the nurses was talking to me all the time. They just made a cut and they had to put wires. They had to put three wires from there into my heart chambers and when, if that was fitted it took about 45 minutes and after that I was, you know, they checked it and everything and I was back in the ward nearly an hour?

Where they had to put my, defibrillator that part only was numbed and that’s only the thing that was, the thing. After a while about an hour, hour and a half I was feeling fine.

And how long did you stay at hospital?

I stayed over there for nearly a week.

A week?

Yes

Why is that?

Because they had to make sure because I was taken off warfarin and I was put on to heparin because of my blood thing. They had to make sure that I would go back to my warfarin levels, my warfarin levels are target from 3.0 to 3.5. So they could make sure that the level was up to that data, up to the required standard.

So you went into hospital before the ICD was fitted?

Yes.

And they changed your warfarin for heparin.

They had to put me on heparin.

Can we talk about it because that is a very specific case. So how long before did you go into hospital?

They called me a week before that, you know. And they told me that, Ok well take you on certain days but weve got to make sure that your. They put me on heparin to make sure that the levels dropped before they can insert this defibrillator, you see.

Yeah because they have to

Yeah they’ve got to make a cut to put it in.

And it’s always a danger of hemorrhage and

Yeah

When you are on warfarin

Warfarin yeah

Yeah. And then you had to stay. A week before the ICD was fitted

Yeah

And a week after it was fitted?

Roughly nearly a week but it was as soon as the INR was up again back to normal they just told me, Ok you’ll be alright now.

Do you remember how soon after the ICD was fitted you went back on to warfarin?

They had to put me slowly back to warfarin because soon as the operation was done from next day they had to check the INR and according to what levels my INR then they had to give me that much warfarin, you know, those levels, like 5mg or 6mg to go back to normal, you know, what my targets are, you know 3.0 to 3.5. So soon as it was up to 3.0 they just told me, You are aright now and just carry on with this’, you know, warfarin until everything comes back to normal. And you just have your INR checked at [muffled name of hospital] hospital, you know, where every. Soon as they check my INR and they tell me after how long do I have to come back again and have my INR checked.

Ok roughly how often do they check the warfarin?

Well I have to sometimes go, it depends you know, if my INR goes down when I have an INR checked and they say the levels have dropped down then they say, Right come after a fortnight. And after fortnightly they check it and see if the INR is [ah] gone back to normal then they say, Ok come after 4 weeks now’

I was warned that I shouldn’t stretch my arm upwards for about 6 weeks because they didn’t want me pulling the cables, the cables out. And so I was a bit cautious with that and probably a little bit gentle with myself but certainly no more than 6 weeks and it was there and that was it.

Ok

Yeah. I was given very good advice about what electrical equipment I should not use, particularly motors which have got magnets in them and the problem of security arches at airports and secure buildings which was quite amusing. First time I went abroad I went through, showed the card which I have that indicates that I’ve got the ICD. When I came to the screen and I was directed through a gate to a gentleman stood ready to pat me down and there was a lady standing to one side. I think she realised it was my first time. She said, You were hoping for a lady weren’t you?’ And I answered, Yes I’d made up my mind I was going to look around and see who was the most charming and beautiful and I would have chosen you. [Laugh] So I got the response, You’re good’ [laugh]. But yes I got.

What did they do at the airport? I mean what ____

Well instead of walking through the screen which has a magnet in it and that can, I think it can switch off the device

Ok.

Which is not good. In my work I had to go in around some very powerful electromagnets separating ferrous metals from other waste. Once I had this in I had to make sure I went nowhere near something like that.

Ok so what do they do at the airport instead of you going through the magnetic?

Well it’s effectively the same as if you go through and the buzzer goes and they say, You’ve got something on you’, but they will then go through. You stand there with your arms spread, feet apart and in my case a gentleman will go through just patting and actually usually they touch where the ICD is and confirm that I have got one, [laugh] you know, but they just go through and make sure they haven’t got any metal objects or anything unacceptable in my pockets. Belt comes off if I’ve got a large buckle, that kind of thing.

Ok.

But it’s just a simple, as I say, a pat down which is the way the police search for weapons and things.

The other thing I was told, You shouldn’t hang around near the exits of shops where they have these magnetic alarms.

Alarms.

So it’s really, be very careful near magnets.

Ok so in shops, in airports

That’s it

And at home what?

At home not to use powerful motorised tools.

Ok like drills and

Drills, hedge trimmers that kind of thing

Ok

And since I’ve been advised that for domestic equipment it’s alright to use it but don’t use it close to the device, arm’s length as it were, that kind of thing.

Do you use them or?

I do, yes. I can do anything that I had done previously.

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 ones 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.

And how often do they control you? How do they control you?

What happened is that I went to a. The cardiac rehab people phone me up just after, within a week of the CRT going in and asked how I was. And I did say to them I was getting the sort of chokey feeling in my throat. It was really very apparent. And so she spoke to the consultant and he said, Well I think we need to check that the CRT, all the lines are in the right place. So I did have a check-up at three weeks and they were able to say, Yeah it’s absolutely working fine. And then I had my normal check-up at six weeks. There was a sort of 6-week checkup which is sort of the routine for a new pacemaker.

So when you went for your 6-week check up at the regional hospital what did they do?

Nothing

What questions did they ask?

They, they didn’t really. They said, How are you feeling?’ And I said, I am still tired. And I did ask if they would adjust the pacemaker because one of the things from being on the pacemaker club and also too when you read the literature it all talks about how settings can be adjusted for individuals. And I’ve never had a setting adjusted apart from when I had the dyssinchrony diagnosed and that was the first time they ever adjusted anything. And so I wonder, you know, whether a lot of pacemakered people are in America where they see their physiologist on a lot more regular basis who tweaks things but [laugh] I’ve never had anything done. But what she said was she wouldn’t adjust it because I hadn’t started the cardiac rehab yet. She didn’t feel that I was really physically at a point where adjusting the pacemaker was going to make a huge difference. So what she said was, I’ll make you an appointment for three months’ time and as well I’ll put you in to see the consultant too. So I am seeing them both on January the 3rd. So again that’s really, you know, I think quite so I’ll be able to have said, Completed my period of rehabilitation. I’m back at work. I’ve been back at work for a number of months and this is how I feel. And then will they adjust the pacemaker too because they can adjust it so that the right, the left ventricle, you know, sort of synchronise it to be working that little bit more, more strongly.

What aftercare is available after an ICD or CRT device is implanted?

Once the device is implanted usually that person will come back for a check at six to eight weeks to make sure that everything is working ok. But on discharge from hospital there will be a contact number given as well to contact the specialist nurse in case there is a problem or a concern or a question. So a 6- to 8-week follow up usually back at the hospital. If everything is ok then usually 6-monthly and then yearly but it is possible actually to have the device checked remotely. As long as the person has a BT line then it is possible to have that check remotely and not have to come into the hospital. Having said that, those remote checks are helpful and can reduce the amount of inconvenience for the patient coming back to the hospital but it is important they are actually physically seen at least once a year.

So the benefits hopefully if the patient has heart failure and they’ve had a CRT device then hopefully they would feel less breathless. They might have less leg swelling. They might find that they can do more than they were able to do, so walk further for example. And just feel that they have more energy because the device is helping with what we call the cardiac output, the amount of blood that is available to the body in each minute that is pumped out.

What are the kinds of concerns or problems that some patients bring with them to a clinic?

Sometimes people can find the device a little bit uncomfortable. Although the device is placed under a muscle layer underneath the bone that goes across the top of the chest here it should feel fairly comfortable once the person is used to it being there but some people do find that they are aware of it and sometimes sleeping in their normal position may not be as comfortable because they are aware of the device within their chest.

Sometimes there are technical problems with the devices for example the lead may fracture and not be working properly.

And some people who have devices actually struggle just with the idea that they have a device in their body that their life may depend on. And that can have an enormous psychological impact and can cause quite a lot of anxiety and concern.

How do health professionals deal with those emotional problems?

Well I think the most important thing is that before the device is implanted those things are discussed and the person has time to think about the implications and to think about how they as an individual are likely to feel once the device is in. It is possible to remove the device in extreme circumstances if it is causing a lot of distress but that would ideally be avoided by a thoughtful decision in the first place as to whether that person is suitable for a device.

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 theres 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].

Oh yes, yes I belong to a retired men’s club and we were at a country house, National Trust property yesterday and about once a month we are doing something, two or three holidays a year. When I say holidays four or five day breaks, that kind of thing in a group that we know each other. I think theres three or four other ICDs in the group [laugh].

And this is in Britain or abroad also?

In Britain or abroad. We were in Holland last month. Unfortunately the tulips weren’t flowering as well as we would have like but, you know, it was a good few days break.

Ok so you keep active.

Yes oh yes.

Socially active

And I play golf.

How often do you do that?

Well with the weather weve had this year I’ve played about three times since Christmas but ideally I’d like to play probably an average of once a fortnight.

Ok. Yeah that’s very good.

I mean I was surprised when I was talking to one of the specialists before another operation and he was asking me what I did and I said I play 18 holes of golf.
Oh in a buggy?’ No walking. Oh you’re fit.

Now how long after the ICD was fitted you started feeling better, did you start noticing the difference?

It takes day by day, you know, you find that, you know something is improving. It will take months and months and months sometimes. It is just improving little by little. Then you can notice yourself that this device is doing something for you because where you had palpitations and sometimes going, I had even heartbeats as well. Sometimes it goes very fast then it stops suddenly then restarts again. I used to have that rhythm: di, dit, dit. The heartbeat was not in rhythm. It was going out of rhythm. So this one did help me a lot with that, the defibrillator did help me because it notices that once if your own heartbeat is uneven it will control, the ICD does control slowly, slowly and I feel that. I feel a bit better with that ICD.

Before I sometimes used to walk about 50 to 100 metres and I used to get tired.

Ok.

And I’d feel breathless and after this device was fitted I felt I could walk a little bit more than that but its ups and downs sometimes. If you are not feeling very well sometimes you do feel that you cannot. Sometimes you can walk 200 metres, 300 metres. You can walk for half an hour and suddenly then some days you can’t because it depends on your health, how you feel. Some days, every day is not the same. Sometimes it goes up and down because you might be walking very, you know, too much so you get tired. So this is what it is, you see. So you have to take slowly at a time, you know, take fewer, few minutes every day and it does improve.

What about the palpitations, have they gone?

Yeah because it’s one of those things, you see. The palpitations, you know, now I don’t feel, you know, like that at all but it depends. Sometimes it’s the days when you are not feeling well when you’ve got cold, cough and things like that, not feeling well.

Recovery. It’s a bit slower but in the long term it’s very good for you. It does help you a lot and you find much, you know, much better in your life and does encourage you to go ahead, you know. Some days you feel down, some days you are up and you know you are doing more than you want to do.

Some time, every three months I used to go because they had to make sure that, [ah] you know, because of my batteries and also their records as well to make sure that I’m not having any problems and everything was running ok. So I was, I was, you know, I was very, very backed up with those people and they told me a lot of things and that’s how it encouraged me to have this thing done.

So every time you go you continue going every three months?

Yes. I have to go every three months because they give me the dates when I have to go and have it checked. I have it checked and everything and they give me another 3 months to make sure that everything is running ok.

Apart from checking the device anything else they do at the hospital, blood tests or ECGs or?

If they think theres something wrong then they have the ECG done but so far since I had the defibrillator fitted I didn’t have any problems so, you know, they always tell me every three months but I go once a year for a checkup at name hospital. That is when they do my echo. They do my ECG and I have a chest X-ray as well.

Ok so once a year you see the cardiologist?

Once a year, yes, cardiologist yeah.

Ok.

To make sure that everything is fine. And they told me I was doing very well now.

After the implant, after one month I went back for a monitoring visit and then every three months from then on I was being monitored. For the first year or two I had to go down to the hospital and see the technician there. They would, to my mind a very clever system, they put a sensor over the top of the ICD which was connected to a clever piece of electronic equipment, pressed a few buttons and printed out a chart and a graph that said exactly what action the ICD had taken over the last three months. And were able to ask me, What were you doing at such and such a time on such and such a day’, because it reacted at that stage which is amazing to me but it obviously shows that the thing was working and I still haven’t worked out just what kind of thing I’m doing that causes it to react.

Do you know which kind of program, which kind of setting you have on your ICD?

I seem to remember they set me at 60 beats, something like that.

Ok they were not synchronised?

They were not synchronised and it was necessary to put these extra electrical pulses in to try and get it back into synchronisation. And there have been a few occasions in the early days in particular when I was, I’d be lying in bed and I’d be able to recognise that I was getting a particular heartbeat. I think that was when it was actually pacing me.

Ok

Recently I went for a another check with my local consultant and I had to have an ECG before seeing her and I was lying there. I thought calmly nothing was happening but when I went in to see her she showed me the chart and could show that the pacemaker was actually pacing at one stage within that test and I had no knowledge that it was pacing.

Ok

Yes

So you haven’t sort of felt any?

No, no I mean as I say in the early days I just felt when it was very quiet particularly if I was in bed and not going to sleep but. So that is no real problem to me quite honestly.

If I go for a medical examination which involves any the equipment, you know, [mutter] the, I certainly can’t have an MRI scan but the other scan I’ve had for a number of things.

CT scan?

CT scan, yes. They need to know that I’ve got the ICD. I had an investigation for the bowel. They had to have a technician there to switch it off and monitor me while the procedure was going.

Ok so you were diagnosed with bowel cancer after you had the ICD?

Oh yes a couple of years ago.

For the bowel operation which I had 18 months to 2 years ago they actually had to have a technician come in and switch the device off and then monitor me so that. I mean one of the things they don’t want is for the defibrillator to kick off in the middle, when they, [ha] of an operation. But also they are conscious that I have that and they can monitor it and take the care of not having that give any problems to the other procedure.

Ok and you have had CT scans?

A CT scan yes. I’ve had numerous CT scans. I’ve been getting those every 6 months since the operation. I’ve now moved on to annuals.

After the operation for your bowel cancer did you have either chemo or?

I did have chemotherapy. I think its 5 FU treatment. If that means anything to you. Again I was told it was precautionary. They were satisfied they’d got everything. But I felt that the treatment I was having was. I had to go in once a week for so many weeks and I had an injection. They gave me the chemo by injection. They did tell me that they could have given it by tablets but one of the side effects that can happen when with the chemicals is that it can set the heart giving problems and knowing I had the heart condition and the ICD they would rather have me there. And I did notice the nurse who gave me the first treatment, she was watching me like a hawk all the time while she was very carefully putting in this injection and going very slowly with it just in case I got a reaction. So it was another thing that I have to be conscious of. Early or later in the thing I was having a bit of difficulty with the bowel so they wanted to do another internal examination and they were, they sent me an appointment for the local hospital and I rang them up and said, You do realise I’ve got an ICD?’ Oh what’s one of those?’ Went for advice. I’m sorry we can’t do you here wed like to do you in another hospital that’s quite close because that’s where the people who had ICDs and needed the technician present. So it’s just one of those things that I’ve got to be a little bit conscious that I’ve got it.

Do you know what they are going to do then?

They told me that they were going to replace the new battery but they will put me under general anaesthetic so this time. So I don’t know what else they are going to do so.

Again would you need to go into hospital a few days before?

They told me that it is not necessary. I don’t know why but they told me I have to go through Day Surgery thing. So I am going to go for day surgery. That’s what they said.

For day surgery, ok. Any questions, any concerns about it or?

No because I know I had it done once so, you know, I am not worried about it.

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.

The thing was after about two years they offered that I could have remote monitoring and that means that I have a device which sits beside my bed and is connected to a telephone line and at some time during the night on the day that I have been told that I will be monitored they phone. I am sleeping. They interrogate my machine and within two weeks I get a letter to say that they have received the report and the next date for monitor will be three months later.

And so that saves me three journeys to the specialist hospital and I have to go once a year when they like to see me in the flesh [ha] and check it through, you know, face to face and decide whether they need to reset it or not. I was told when it was fitted that [ah] the battery was likely to last about five years. Well we are coming up towards the five years now. When I was last there in January they said the battery is going well so I don’t have to have that then yet but when that is due I believe that what they will do is that they will remove the ICD hopefully just plug the existing cables into a new one and give me one with a new battery in it.

Ok

I’ll wait to find out exactly what happens.

Ok. Can you tell me a little bit more about the monitoring they do in the hospital when you go. Apart from the ECG which other tests do they do: blood tests, I don’t know.

No just go in. Sit on the couch. Put the sensors onto my ankles and my wrists and. So almost like a mini ECG kind of connection and then put this magnet thing on the device, interrogate it. Sometimes they’ll switch it off. Sometimes they will say, Now we are just going to change it and try something. You may feel something happening. And at that stage they’ll just check that they are satisfied that it is working in different ranges. And they can adjust whether they feel the, the pace is right or not but I don’t think they’ve had to do an awful lot with me. They [ha]

Ok. And how is your heart overall?

Now it appears to have corrected the problems that I had in the early stages. I saw the local consultant two weeks ago and she has said that I am stable. She is happy that things are going on well and she doesn’t want to see me again unless I have any problems that I need to contact them for. So really I’m very happy.

And will you continue with the ICD checkups?

Oh yes, yes I think I’ve got that for life now.

And those are every three months?

Yes

Ok

One thing which was interesting and surprised me a little was that I had no problems with this small device sitting on the bedside cabinet beside my bed and it has a little red light on to show that it’s working but it really upset my wife. Shed get up in the night, see the light and was upset by it reminding her I wasn’t right even, although I was perfectly alright sleeping.

So the availability of help and support for patients with these devices will vary across the country. In some places I understand there are 24-hour helplines. Certainly in Oxfordshire we don’t have that but there is a nurse available for queries and concerns during normal working hours.

If someone had a problem with their device and they were feeling unwell, so for example if they received a shock from the device and they were feeling unwell then they should seek emergency help. So dial 999 and come into hospital. If, however, they had a shock from the device and they recovered and they were feeling ok then they should just contact their ICD nurse as soon as possible during normal working hours because they might well need to come in but it wouldn’t be an emergency situation. So if there was a problem and the person is feeling unwell they should seek urgent medical advice. Dial 999.

Ok.

There is also e-mail contact with nurses as well. Patients can e-mail for advice which is often more convenient for all concerned actually and telephone calls are obviously common.

Ok. I also heard about the education days for the patient and their family?

Yes. Again it varies around the country but in Oxfordshire there is a support group for people with ICD devices, internal defibrillator devices and those people come along and speakers are invited. I’ve gone myself to give a talk about heart failure. Not everybody with an ICD has heart failure but some may. So different cardiologists, nurse specialists, dieticians, pharmacists might come and talk to patients about various aspects about cardiac care. And then there are often support groups as well. There is in our area a patient-run group and they support each other as they are all experiencing similar situations.

I think as well it would be quite good to be able to say about the importance of discussing with family because that person might say, Oh, you know, I don’t know what to do. Tell me what to do,’ to the clinician when in fact the family are the people who know that person very well. So I think if there are any doubts about whether someone is suitable for a device it’s very important that they discuss it with their family anyway actually.

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.

So if someone with an ICD receives a shock it will be because the heart has gone into an abnormal fast life-threatening rhythm. If the heart does go into an abnormal life-threatening rhythm some people may pass out very quickly. If the person is aware that there might be a problem, say for example they start to feel dizzy or unwell it’s very important that they sit down or lie down if possible so that if the ICD should give them a shock they are safe and they are not going to fall over and hurt themselves potentially.

When the ICD gives a shock the feeling is described as a kick or a punch in the chest. That’s how it feels. Some people may experience that if they have an abnormal life-threatening heart rhythm and they don’t pass out they may experience that. So they should be aware that that might happen to them. They may have an odd feeling and then receive a hard blow, a feeling of a hard blow to the chest which is the electrical shock going off. If that happens and they do receive a shock and they are aware then obviously the best thing to do is sit or lie down as soon as possible.

If they receive any warning that they are feeling unwell and think they might be about to receive a shock not only sit or lie down if possible but let someone know that you are feeling unwell so that they can be around for you. The difficult thing with this is that they could be in any situation at that time and it could feel quite awkward to be in a shop, for example, and suddenly feel unwell and think they might be about to receive a shock but to just mention to someone who is nearby, Excuse me I’d like to tell you that I am feeling unwell. I’m just going to sit down here a moment. Would you mind just waiting a moment and calling help if necessary. So that they are not feeling completely alone and frightened at that point in time.

If they do receive a shock and they haven’t been aware of it they may just suddenly wake up on the floor. So they might not have had any preceding symptoms and suddenly just wake up on the floor unexpectedly. So lie there for a few moments, give yourself time to recover and then gradually sit up and then stand up. And then if you are feeling ok call a member of family or someone if you are out and about because you mustn’t drive if you have received a shock from your ICD. You need to call someone to come and help you [deleted]. And if you are feeling ok you just go home [deleted] then you contact the ICD nurse at the next convenient time or when you get home. If that’s within working hours [deleted] or on the following working day.

But if you are feeling unwell you should go to hospital. Call for an ambulance.