Eileen

Treatments for Eileen’s AF have included cardioversion, pulmonary vein isolation ablation, a pacemaker, and AV node ablation. She takes warfarin and diltiazem but has had side effects from bisoprolol, flecainide, digoxin, and amiodarone.

Eileen describes her experience of AF as an interesting ride;. The ride; began one morning 10 years ago when she awoke with a fast pulse rate, fluttering like butterflies in your chest;, and needing to go for a pee; a couple of times in very quick succession. Admitted to hospital, she was told it was my age and would probably never happen again;. But it did – lots and lots of times;. It was not until she eventually saw a cardiologist in A&E that she was diagnosed with AF.

Eileen is unsure what caused her AF, but there is a family history of AF and stroke. She also thinks her high blood pressure and stress might have played a part. Over the years she has undergone a number of cardioversion procedures, none of which was successful for more than about 6 weeks. She describes her experience with chemical cardioversion with the intravenous drug adensosine as the most awful feeling;. On one occasion while undergoing a cardioversion, Eileen woke up hurting all over thinking she;d had a stroke. She describes this as the worst experience of my life;. A pulmonary vein isolation (PVI) ablation to regulate her heart rate was also unsuccessful.

Acting on her doctor’s advice that AF will never kill you but a very slow pulse will;, Eileen had a pacemaker fitted when her pulse rate fell to below 30. A month later, however, she was back in A&E in and out of AF like a yo yo;. Unable to take digoxin because of side effects, Eileen opted a year later for an AV node ablation. In retrospect she wonders whether she may have jumped the gun; given the advances in science and the irreversibility of the procedure. However, her standard of living has improved considerably and she has no regrets.

Eileen admits that she’s tried every drug in the book; to treat her AF, including beta- blockers and anti-arrhythmia medications such as atenolol, bisoprolol, flecainide, digoxin, and amiodorone. For the most part, the drugs have had no effect or have caused side effects. Eileen admits it’s been a juggling act; trying to balance her AF while managing her high blood pressure. A change in beta-blockers from atenolol to bisoprolol left her tired, breathless, and down in the dumps; with her blood pressure out of control. While digoxin stabilised her AF, it left her feeling nauseated, not eating and out of breath. Amiodarone upset her irritable bowel symptoms.

Eileen is terrified of having a stroke. Having seen the devastation of her mother’s stroke, she is only too pleased; to be on warfarin. She has bought a machine to self-monitor her INR levels from home. Taking a reading on the machine and then ringing the hospital with the results reduces Eileen’s visits to the anti-coagulation clinic for blood tests and gives her a sense of control. She’s had the odd glitch; where her INR levels have risen, including getting a cold and eating too many greens. On warfarin she bruises easily, has the odd nose bleed, and finds that cuts take longer to heal. Although she is aware of new anticoagulant medications such as dabigatran she is happier to keep on the warfarin rather than risk the side effects of changing her prescription.

Eileen has found the Atrial Fibrillation Association a key source of information and support. She has attended patient days at arrhythmia conferences where consultants speak about new treatments and options for people with AF, and has talked about her experiences to members of parliament. She believes that the public should be made more aware of AF because of its link to strokes.

Eileen is dependent on her pacemaker which she has checked every 6 months and tweaked; every now and again to adjust for palpitations and to make it react to exercise a bit more;. As well as warfarin, she takes a combination of candesartan for blood pressure and diltiazem for heart rhythm. Since having the AV node ablation, life is pretty good;. She still feels breathless walking up hill and is aware of palpitations in her chest but they no longer govern her life. As she says, I;ve learnt to adjust and do a lot less. You can’t let the bugger beat you, so you carry on and hope for the best;.

Interview held 23/01/12

Eileen highlighted the importance of responding to the patient’s lead’ rather than being over-protective.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen called for standardisation of treatment and services across the UK.

Age at interview 63

Gender Female

Age at diagnosis 53

Despite having no regrets about having an AV node ablation and pacemaker, Eileen wonders whether she might have jumped the gun.

Age at interview 63

Gender Female

Age at diagnosis 53

For Eileen home monitoring is a convenient way of testing her blood without going to the hospital.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen described the difficulties of trying to balance blood pressure drugs with medication for her AF.

Age at interview 63

Gender Female

Age at diagnosis 53

While Eileen wanted to find out more about the mechanics of AF, she was less interested in going online to find out about lifestyle changes.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen keeps up-date with new treatments at annual Atrial Fibrillation Association conferences. Local groups offer a chance to meet other people.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen described what happens in cardioversion.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen underwent a number of cardioversions over the years, none of which worked for more than six weeks. She described the worst of these.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen spoke about the psychological impact of having a pacemaker, but admitted that her quality of life had improved since having an AV-node ablation.

Age at interview 63

Gender Female

Age at diagnosis 53

Eileen explained how she had gone on antidepressants as a result of her AF.

Age at interview 63

Gender Female

Age at diagnosis 53

After the first attempt at chemical cardioversion failed, Eileen was reluctant to try it again. The procedure was again unsuccessful.

Age at interview 63

Gender Female

Age at diagnosis 53