Elisabeth Y

Age at interview: 69

Age at diagnosis: 63

Brief Outline:

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.

Background:

Elisabeth is a retired nurse who lives on the most northerly inhabited island of Britain. She is widowed. Ethnic background/nationality: White English.

More about me...

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

Elisabeth Y’s AF has slowed her down and reduced the amount of gardening, walking and country dancing she can do.

Oh, goodness, it’s slowed me down. Look at the mess in my garden. That was partly my broken wrist and I mean I can’t go walking up the hills anymore and I used to, I didn’t do it a lot, perhaps just three or four long walks in the summer, well, I was doing bed and breakfast and I was doing, when I was doing evening meals I was pretty tired, you know. And then I was a home help for an old lady in [place]. She died when she was a hundred one and a half but she was in care for two or three years before that but I was her home help until she was well in her nineties and so doing long walks was not a daily possibility but, at the same time. And then dancing, Scottish country dancing, don’t speak to me about that. We’re all either dead or crippled now [laughs] and we used to meet in [place] so I couldn’t go very often, you know, but definitely slowed me down, yeah.

Elisabeth Y explained why she refuses to take warfarin.

From day one I was badgered to take warfarin and we were just about to go round Iceland you see and I said, “I’m not taking it anyhow but.” I said, “I’m certainly not going to bleed all the way round Iceland.” You know how empty the island is.

And I said, “Look, I’ll sign an affidavit. I’ll put a letter in your case notes that I refused it.” I said, “If I had an artificial heart valve I’d accept it very willingly.” And when you think, six and a half years, I’ve not had a stroke. Touch wood. And, I’m not really superstitious, that’s just a way of behaving. And when I think of all the blood tests weekly that I’ve avoided and all the bottles of pills that I’ve avoided.

The point is they don’t understand who I am. I’m me and I have certain knowledge including, I have girlfriends running to the GPs once a week and being and having their fingers pricked and then some people have these things that they can test themselves. I mean what a carry on. It’s not a life to my mind.

Elisabeth Y realised she had to eat more healthily and lose weight or risk developing type 2 diabetes.

Well, my fasting blood sugar got, no, it was glucose tolerance test, got so high that I was just zero point five off being a type two diabetic and I was eating like a pig, eating ordinary good food and then stuffing myself with sweets and cakes and all sorts and I thought, “[Elisabeth], you’re going to have to do something about this.” And I came home, keyed into Google diets for type two diabetes, and there was one that really was just so different and so paradoxical that I’ve been on it ever since, high fat, high protein, low carbohydrate, cut out all the white things, you know, rice and bread and sugar and all this. 

I lost the weight in about six months. This is the bit that’s annoying me, my weight has settled at thirteen stone and doesn’t go down. The other half of the trick is portion control. 

Elisabeth Y, who lives in the remote Shetland Islands, spoke of the difficulties she faces getting treatment.

The appointment was at two fifteen and the boat home sailed at five. You’re meant to be on board for half past four and they took their time over the ECG and then they made me get dressed again and then they took their time over an echocardiogram and then I finally saw the man about the time I should have been climbing on the boat, you know, and I said to him, you know, “I’m going to miss this boat.” And he just looked at me as if I was making a fuss over nothing.

And because I live in Shetland and because no cardiologist ever comes to Shetland any more (they used to come), despite the fact that heart disease is the biggest killer of both men and women in the UK at the moment, I have to jump up and down. I have to write letters to our MSP, (that’s the member of the Scottish Parliament because health is a matter totally devolved to the Scottish Parliament), and a copy of that letter to the General Manager of the Health Board.

Elisabeth Y, who lives in a remote part of the UK, spoke about how health care could be improved in isolated areas.

I found out fairly recently, through the Atrial Fibrillation Association of a new type of cardiologist, the electrophysiology cardiologist and I thought, “That’s the man for me.” He specialises in irregular rhythms, you see [laughs]. And because I live in Shetland and because no cardiologist ever comes to Shetland any more (they used to come), despite the fact that heart disease is the biggest killer of both men and women in the UK at the moment, I have to jump up and down. I have to write letters to our MSP, (that’s the member of the Scottish Parliament because health is a matter totally devolved to the Scottish Parliament), and a copy of that letter to the General Manager of the Health Board and, eventually, I’ve had two different appointments down in [mainland city] but one was for an ordinary cardiologist, who wasn’t much help, but I did get an appointment. And then I got this appointment last September, just nearly a year ago, the fifteenth so it’s nearly a year, with this electrophysiologist guy [laughs].

The appointment was at two fifteen and the boat home sailed at five. You’re meant to be on board for half past four and they took their time over the ECG and then they made me get dressed again and then they took their time over an echocardiogram and then I finally saw the man about the time I should have been climbing on the boat, you know, and I said to him, you know, “I’m going to miss this boat.” And he just looked at me as if I was making a fuss over nothing.

Well, I think you ought to be seen by at least a cardiologist once, don’t you think? Am I being unreasonable?

It sounds a sensible idea [laughs].

[Laughs] and I think 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 that way to [mainland city] and then to miss the boat home.