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