Jenny

Age at interview: 55

Brief Outline: Jenny and James had never heard of AF, so when by chance Jenny noticed James’ irregular heartbeat, they dismissed it. James’ stroke turned both their lives ‘upside down.’ Jenny believes there should be a campaign to raise awareness of AF and stroke risk.

Background: Jenny is an administrator within the property letting business and lives with her husband, James. She cared for James after he had a stroke due to undiagnosed AF. Ethnic background/nationality: White British.

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In March 2008 Jenny’s husband James had a stroke, and following tests, they were told that undiagnosed atrial fibrillation had been the cause. James did not have any symptoms of AF. Six weeks before James had his stroke, Jenny recalls having her head on his chest and hearing an erratic heartbeat. They both laughed and thought nothing more of it. Jenny and James now think ‘if only’ - if only they had known about AF, if only they had gone to GP about the erratic heartbeat, if only they had looked the symptom up online.

James was in hospital for twelve days and unable to work for eleven months following his stroke. For three months James only responded to questions. He did not lose his speech, but was slowed in everything he said, thought or did. Jenny reports that this was a very stressful time and she felt isolated. For some time after the stroke, James was very tired most of the time, and found even small tasks exhausting. Jenny did lots of research about AF online. She found and joined the Atrial Fibrillation Association, which she found to be a great source of information and support.  James had been put on beta blockers but these did not seem to work for him. The couple found an electrophysiologist they wanted to see, and James had three ablation procedures. Jenny was very worried about him having the ablations due to the associated stroke risk. James had made six months of progress, and she was terrified of him having another stroke. She found the hours that he was in the operating theatre very difficult. However, James felt strongly that he wanted the ablations, as his quality of life was not acceptable to him. They were told that the chances of the ablations working were 40% after the first, 60% after the second, and 80% after the third. The doctors said that they would have done a fourth ablation if the third had not worked. James has been in normal sinus rhythm for four years now. James was prescribed warfarin after he had his stroke, and remains on it now. However, he still struggles to get a stable INR reading after four years. He had to come off warfarin for the ablations, plus also has had to for other procedures, such as having a tooth out. The couple would be prepared to pay for an alternative to warfarin that did not require regular blood tests.

Jenny feels that the care James received was excellent, but thinks this is partly due to him being in a small hospital. She thinks that people in a bigger hospital who are not able to speak up may struggle more to access all the services that are available. A few days after the stroke, a doctor in the hospital said to Jenny that James would recover. She did not believe him at the time, but looking back, she realises that he must have seen so many cases that he could judge that James would improve. However, Jenny says that the stroke turned their lives ‘upside down’ Four years on, she says that she is still not over the shock of finding James having a stroke, and feels that ‘it wasn’t only his trauma, it was mine.’ Because a stroke affects the brain, Jenny had thoughts over the extent to which James would recover. She says that she did not receive much information on stroke whilst James was in hospital. Jenny reflects that on good days, she thinks that they had a ‘lucky escape’ because it was a reasonably mild stroke and James has recovered. But on bad days, she thinks it was so unlucky, particularly as it was caused by something that can be treated.

James still walks unevenly and thinks a lot before answering a question. He used to swim, but now finds it difficult due to weakness in his right side. Jenny feels that they have both changed due to James’ stroke. James thinks he hasn’t changed, but Jenny thinks that he has. She says that she now finds small problems harder to deal with and has a shorter temper. ‘I think I’m a completely different person. Not for the better, not for the worse, just different. I can’t quite put my finger on it really. I would say my life has changed for the worse, but I can’t really tell you why.’ She says that life ‘can’t possibly be the same can it, because you’ve had this big thing happen to you.’ Jenny found the support of her friends helped her to cope. She advises people to accept offers of help where they are offered. A friend advised her to ‘take one day at a time.’ Jenny says that ‘If you let your mind gallop to what might happen in six months’ time, you just couldn’t cope with it.’ The couple have altered their plans for the future, as Jenny feels too scared to do some of them now. However, something positive to have developed is that Jenny is now determined to do certain things. She urges people that money allowing, if there is anything you want to do, to go and do it and not put it off. She says that James still puts things off, but she now refuses to.

Jenny says that if you find a lump on your body, you know to go to the doctor and have it checked. But she says that with an irregular heartbeat, people ignore it and are unaware that it should be checked out. Jenny urges people to take their hearts seriously, as all else depends on it. She believes there should be a TV campaign encouraging people to check their pulses and see their GP if something does not seem quite right.  She challenges policy-makers to think about the cost to the NHS caused by stroke, which in James’ case was caused by AF - something that can be treated.
Interview held 3.2.12

James’ wife, Jenny, had heard his heart beating irregularly a few weeks before he had a stroke, but they dismissed it. They now realise it was a symptom of AF.

About six weeks before, we were upstairs laying in bed watching TV, and I put my head on his chest, and as I did it, oh God, it was so uncanny, I said, “God.” I went, I said, “Your heart is all over the place!” Instead of tick tock tick tock it was bom bah bom, bah bah bah bom, and gaps in it. I just went, “Your heart is all over the place.” And I laughed and he laughed and we carried on watching TV, and we didn’t do anything about it. I’ve never heard of AF and, of course, when we got to A and E and they said, “Has your husband  got a heart complaint?” And I said, “No.” And then I went, “Well, actually, a few weeks back I did happen by pure fluke, that his heartbeat was irregular.”

James’ wife, Jenny, spoke at length of the impact his stroke had on her.

I think we’ve both changed. I think we’re both a bit… I think we’re both a bit more emotional. I’m definitely more short tempered. I’ve always had a short fuse. I would say I don’t have any fuse any more. I find it very difficult to cope with the smallest of small things that goes wrong, and things that should be little worries are enormous worries, which is stupid, because we’ve had the we’ve had the big hit haven’t we? I can’t think anything is ever going to be as worrying as all that, you know, that whole episode was. Yeah, we have we have yeah, we have both changed I think.

So has it impacted on your relationship?

Not on our relationship together, no, it hasn’t. I would like to turn round and say, “Oh, I now know that life is too short to argue and I’ll always be nice.” But I know that that’s, that would be not the truth [laughs]. You like to think, “Oh well, oh God, he’s been through this. I’m never going to shout at him again for not hanging his clothes up.” But, of course, I do. So yeah, we’re, I’m definitely a changed I am definitely a changed person. James probably would tell you that he probably isn’t. I think I’m a completely different person. Not for the better, not for the worse, just different. I can’t quite put my finger on it really. I would say my life has changed for the worse, but I can’t really tell you why. I don’t I don’t know why. That’s just.

Just how it…?

That’s just how I feel. And I’ve dabbled I’ve dabbled about with antidepressants, but I don’t know that they really help. I think you’ve just got to accept, which I find quite difficult, that you’ve had a big whammy and that it is going to change you.

James’ wife Jenny said that they had never heard of AF before her husband’s stroke. She feels that they now have to live with thoughts of ‘what if’.

So the big thing is, your big, that you have to live with is, if only. If only we’d booked a doctor’s, if only we’d even gone onto the internet and put in irregular heartbeat, that information would have been there, enough information would have been there to have gone to the doctor, who’d have put you on an anti-coagulant or put James on warfarin, and there’s every chance that stroke would never have happened. He’d have had AF but he wouldn’t have had the double whammy of a stroke on top of an irregular heartbeat. 

Jenny, whose husband had a stroke due to AF, advised people to take one day at a time.

Take one day at a time. And that sounds a really like trite thing to say, but if you let your mind run ahead to what might happen if you don’t get that appointment, or if you do and while he’s there he has the stroke again blah blah blah, you would be in an, you would be in a nut house. You literally have got to think, “Right, tomorrow, we’re going to go to the hospital. He’s going to get physio.” That’s it. And then when that’s happened you think, “Tomorrow we’re going to go to the hospital and they might agree to do the ablation.” And that’s it. Just take one day at a time. If you if you let your mind gallop to what might happen in six months’ time, you just couldn’t cope with it. 

Jenny would like to see a campaign where it becomes second nature for people to visit their GP if they have signs of AF.

That’s the real bummer, that’s it such an easy thing to know you’ve got it or you haven’t got it, and to think that I heard, I heard James’ heart not beating in, as it should do and didn’t do anything, and yet if you think if you had a lump, everybody, everybody knows that if you find a lump, you’d go to the doctor wouldn’t you. You might be frightened to go but you, everybody knows that that potentially could be cancer. So you would be there, wouldn’t you, like a shot from a gun, and if we’d done that, as I said, a huge chance that James’ stroke would never have happened.