Angela

Age at interview: 55

Brief Outline:

Angela was first diagnosed with Heart Block in 2010 and she had a pacemaker put in. She went on to develop pacemaker syndrome and a year later she was diagnosed with Left Ventricular Dyssinchrony. She was fitted with an implantable device called Cardiac Resynchronisation Therapy (CRT). This procedure has proven successful.

Background:

Angela is divorced, has one grown up daughter and lives with partner. She works full-time as an education facilitator. Ethnic background: White British.

More about me...

Angela was first diagnosed with Heart Block in 2010. She felt increasingly tired and unable to do much. She had a single chamber pacemaker put in and was told that her symptoms were going to improved and that she was going to be fine. Despite the predicted outcome, Angela continued to feel breathless and tired. She went back to work full-time and said she was barely coping with it. Six weeks after the procedure, she had a pacemaker check up and asked if they were going to adjust its setting but she was told it was working fine. The nurse also did an echocardiogram. Angela went to discuss her symptoms with her GP who signed her off sick but also decided to send her to see a cardiologist. The cardiologist in turn, decided to investigate why she still had the symptoms she had complained of before the pacemaker was put in. She had an angiogram which revealed that everything was clear, no problem. Angela went back to her GP who sent her to have other tests and eventually it was found that ‘strange’ electrical patterns were going on in her heart. The hospital arranged for her to have a stress test done in January 2011. They later sent a letter with an appointment for May to discuss the findings from the stress test. Angela was upset and talked to her GP who called the hospital asking why the delay. Angela got a phone call from the hospital the same day and offered a consultation for the afternoon!

During the consultation she was told that there was the possibility she had dyssinchrony; that there was a slim chance that she had develop what is known as Cardiac Pacemaker Syndrome. The registrar who saw Angela suggested she went for reconditioning at the cardiac rehabilitation lab; the rationale was that she needed to work harder to help improved her symptoms. But at the same time, the registrar made an appointment to send her to see a consultant; expert on electro-physiologist, to see if there was the slim possibility that it was pacemaker dyssinchrony. The consultant did an echocardiogram and confirmed she had dyssinchrony. He explained that her left ventricle was like a ‘deflated football’, deteriorated caused by the pacemaker. By then, she had had heart failure for almost a year. She was diagnosed with Left Ventricular Dyssinchrony and Angela was absolutely relieved to have been given a diagnosis and no longer felt dismissed by some – with the exception of her GP, partner, family and friends - as if there was nothing wrong with her.

Following her diagnosis she was referred for a Cardiac Resynchronisation Therapy (CRT). The cardiologist didn’t know if it was going to work but the treatment has proven successful. Angela knows that there are other treatments (devices/drug therapies) she could have now that they know what the problem is. Angela does not take any medication and at the time of the interview, she was near completion of her cardiac rehabilitation programme. She is back at work and plans to continue her exercise routine at her local gym.

Angela joined the Pacemaker club - an online forum for people living with pacemakers. The experiences of others helped her understand that the pacemaker wasn’t working for her.

Pacemaker club

Is it UK based or?

I don’t know if it’s UK or US based. As I say a lot of the membership is in the US but there’s also too quite a lot of English people there. And I’d say it’s quite good because I still don’t know anyone with a pacemaker. And as I say you go to the gym and the chap at the gym goes, and this is in a town, ‘No you’re the first one’. So you do feel quite isolated in just of how your experiencing. And people just write things and sometimes, you know, it’s how they are feeling or how they are getting on at work or sometimes as well we’ve gone back to the doctor and nothing has been done and then people who have got pacemakers for years and are quite experienced about this will talk about sort of adjusting the rate response. And there does seem to be, a picture emerges that doctors, the medical profession will often say, ‘The pacemaker is working fine and you’re not’. It’s like the old joke about the operation was a success but shouldn’t say it’s a joke. The operation was a success but the patient died. And pacemakers are a bit like that now that they are put in as a, ‘Well you’ve got a heart block we’ll put a pacemaker in and the pacemaker is working fine.’ And that, I think that was, was just the thing that has just been so upsetting is nobody would look at me and go, ‘But you’re not right are you? Ok lets’. I know I say nobody, my GP did, you know, my GP but they are just referring you through to the experts and when the experts are going, ‘Well your pacemaker is working fine.’

Angela explains what happens during CRT surgery.

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.

Angela expected that the CRT setting would be adjusted at her six weeks check-up because she continued feeling breathless.

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. 

Angela has kept a diary recording what she does each day and finds it reassuring when comparing how much she is able to do now with what she was able to do two or three months ago.

One thing I’m doing is keeping a journal. It’s, you know, it’s not a great sort of in depth thing. It’s never going to be published in a hundred years’ time as. But I write what I can do each day and that’s been good because I can write, I can look back and go, ‘Well two weeks ago I couldn’t do this or two weeks ago I was only able to do so and so.’ And it’s things like having a rest, I’ve noticed that whereas I used to sleep every afternoon then it got to be I’d just lie on the sofa but I write what I do and so it might be: took the dog for a walk, made some chutney, did a bit in the garden, drove to so and so. But to be able to say that is very different from pages of two or three months ago when it was very limiting on what I could actually do.

Has it helped?

It has. It has because I can, you know, and I’m starting now as well to think I should write, you know, like if I’m feeling a bit low or if I’ve had a really good day. You know if it’s been a beautiful day I’ll be, ‘lovely day and did so and so’. But it is that thing of being able to have that, almost that record of turning back a month and being able to remember how I felt a month ago compared to how I feel now. So my improvement is. It’s at a very gradual gradient going up.