Elisabeth Y
Elisabeth was diagnosed with permanent AF shortly after her husband’s death 6 years ago. After experiencing side effects from bisoprolol and sotalol, she now takes digoxin and aspirin. Living in an isolated area has impacted on the care she has received.
Elisabeth lives in Unst, the northernmost of the Shetland Islands and the most northerly inhabited island in Britain. Getting to Elisabeth’s house involves an hour’s flight (or an overnight ferry) from Aberdeen to Sumburgh, then an eighty five mile and two ferries; journey by car, bus or taxi. There are 15 inhabited Shetland Islands and 10 health centres, often with more than one GP. There is a general hospital in the capital, Lerwick (about 25 miles from Sumburgh). To see a specialist involves a trip to Aberdeen, Clydebank, Elgin or Inverness paid for by the NHS. It is not surprising therefore that geographical isolation has played a big part in Elisabeth; story of AF and her experiences of care.
Being a nurse, Elisabeth was familiar with AF. She recalls having an episode of paroxysmal AF 20 years before her diagnosis when her mother died from a stroke. However, it was not until 6 years ago, shortly after the death of her husband, that an ECG confirmed AF. She believes that grief may have triggered her condition – as she explains, grief is its own country; – though acknowledges that her 3 younger brothers also have AF. She is now in permanent AF. As a nurse at her GP surgery explained: It;ll not go back to normal now, Elisabeth. You;re over 60;.
Elisabeth was not prepared for the journey; she has had since her diagnosis. She has felt weak and tired, and beta-blockers have made her feel ill. Elisabeth was prescribed a low dose of bisoprolol when her pulse reached 140. Elisabeth describes how she felt I was being poisoned;. Referred back to a consultant, Elisabeth started taking sotalol. She vividly describes the effect: on the slightest slope, the whole of the inside of the contents of my ribcage felt as if they were swishing round like a washing machine when it’s doing its spinner;. She also felt a strange sensation like invisible hands pushing her knees forward. She thought her heart was packing up; and that she was going to fall flat on her face. Doctors were unable to explain her symptoms but a friend told her that he had also experienced similar problems on sotalol and suggested she cut the tablets in half. This helped but when she ran out of tablets on a cruise she started feeling better and better and better;. A cardiologist recommended verapamil but Elisabeth stopped taking this when she became constipated. At her instigation, she was finally prescribed digoxin and feels perfectly well;.
Elisabeth has found support from the internet and the Atrial Fibrillation Association (AFA) invaluable. She attended a conference in Birmingham organised by the AFA where she was told that digoxin was a thing of the past; and that aspirin is of no earthly use to prevent strokes;. However, both drugs speak to her condition; and she is happy to continue taking them. Although badgered; to take warfarin when first diagnosed, she was put off by the need for regular blood tests and dietary restrictions which would interfere with her quality of life. She also recalls how Scotland’s First Minister, Donald Dewar, who was on warfarin, died from a massive cerebral bleed after falling down steps and hitting his head. Yet Elisabeth has also experienced heavy bleeding after 2 dental extractions and has also had a recent heavy nosebleed. She believes that these episodes are almost certainly; because of taking aspirin but feels she has to continue taking it to prevent stroke.
Elisabeth’s relationships with consultants have not always been easy. She recalls on one occasion being left lying semi-naked in hospital while a doctor was called, only to be greeted with the words, If I had known it was you, I wouldn’t have bothered to come.; Follow-up appointments were always with a different consultant. Elisabeth feels that she has had to jump up and down; to get the care she needs; a process which she finds exhausting and expensive. As she says, no cardiologist ever comes to Shetland;. She has had to write letter to Scottish Members of Parliament and to the health board to arrange an appointment with an electrophysiologist in Aberdeen. Although he prescribed digoxin, he dismissed the idea of an ablation as slightly suicidal;. After the consultation, Elisabeth discovered that she had missed the ferry home. As she concludes, it’s easier for one fit young professional to move north for a day or two than for a whole lot of frail elderly people to have to go all the way to Aberdeen and then to miss the boat home.; She feels that health professionals have little understanding of the difficulties experienced by patients in isolated areas: They don’t know where Unst is. I think they’re frightened of falling off the edge;.
Interview held 12/09/12