But I have this belief that we as patients just accept what we are told whatever is going to be done to us and, you know, that’s what has to happen and we know what’s happening to us as we go along whereas wives and husbands they only sit and wait and they don’t know and they don’t really know what we are feeling and this kind of thing. And that light really got to my wife and she was much happier when we could put it out of sight.

Have you talked about how you both feel and sort of the impact that this condition has had on you and your wife?

I mean one of the things that I do is. I have a slight back problem, a bit of deterioration in the spine and if we are wandering around an exhibition slowly or standing around. We were at a place yesterday where we were listening to a guide standing up and that gets my back going a little. Nothing to do with the heart but if there is a chair I will go over and sit down or if it’s in a museum I find that if I just say, I’m going for a walk’, and I’ll walk off down a corridor briskly a few minutes and come back and as long as my wife knows where I am and what I am doing that’s fine but it’s not unusual for her when she saw me sit down yesterday to say, Are you alright?’ [ha ha] [mmm] yes.

Yeah

But otherwise that’s. I think she feels it more than I do these days because with the problem that I’ve had I think I’ve become a bit philosophical that I’ve just got to take what’s thrown at me. Yeah.

But she feels that, she worries.

Yes and I think it’s a problem for wives, husbands, the family.

For the loved ones?

Yes. But they are not there being treated and actually experiencing things.

But for the loved ones it may be?

It’s harder. I think it is harder. I try to say to my wife, Look, you know, we can’t change it. Weve just got to accept what comes. And she does try to do that but, you know, I think theres that feeling of helplessness. You know, I suppose it’s the same thing for any loved one. You know, you don’t want them to suffer and if you do, you know the mother will do anything to stop the child suffering and I think it’s that kind of thing with the wife and husband of patient’s have to face. I mean my children, I think they were concerned. My daughter made a point of being with my wife when I had the operations, keep her occupied and this sort of thing but obviously concerned herself but because she is away, she is a professional, she knows what the risks are and so, so not so close as my wife. That’s the situation I think.

Oh and another thing about having the ICD it is possible to obtain information when you are going on holiday where the specialist clinics are that can deal with my particular device.

ICDs?

Yes. And I will be ringing the specialist nurse shortly because, if I can’t find it on the website because she has told me the route to find it on the website [ha] and I can, I am going to Spain and Portugal for a holiday and I will be able to find out where the specialist centres are near where we are going to be so that if I have a problem, you know, I’ll have a sheet of paper that I can give to the doctor, the, anybody who is dealing with me and say, Look this is where my device is, can be dealt with. And they can phone up and get advice.

Ok

So that and in this country obviously I’d refer them to the specialist hospital I deal with and I’m sure that every A&E in the country knows where their nearest ICD centre is.

And what happens with your monitor when you go abroad? Do you take it with you? Do you plug it into a phone?

No I don’t, no I don’t bother. I could but then I’d have to register to a new phone number and quite honestly, you know, for two weeks at a time I’ll take my chances.

Ok.

Yeah I mean if, if it was giving a lot of problems then I might have to resort to taking it with me and setting it, but when you are on a coach tour staying in a different hotel every couple of nights it’s going to be an awful lot of work and I’m not that confident that I’d get it all set up properly before I moved on somewhere else.

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.

That’s right. Yes but if anything happens that I feel I need advice I can contact the specialist nurse and talk to her and I am sure if necessary I could go over, sit down with her and discuss things or shed arrange for me to talk to a specialist in whatever field my question was but I haven’t had need for that.

All the specialist nurses I have found have been very good. They are prepared to spend the time to talk to you and to your wife and answer questions and give practical advice. I had a procedure recently and I was having difficulty afterwards. Rang the specialist nurse and she explained this is something that would happen and it will stop in so many days. If it doesn’t come back. So [ah] that kind of advice and certainly they make sure you have contact telephone numbers and names so that you can go to them and get the advice. I mean I’ve got a lot of respect for the doctors, the consultants but often I find it’s the nurses who can give the practical care and advice [chuckle] that is helpful to the patient and the family.

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.

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.

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.

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.

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.

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.