Glyn was diagnosed with AF 8 years ago. Catheter ablations, a pacemaker, and antiarrhythmic medication have failed to control his AF. Unable to work, Glyn suffers anxiety and depression. He is critical of the standard of care he has received.
Glyn was diagnosed with AF 8 years ago when he developed a rapid heartbeat a couple of months after a hernia operation. Since then he has been on a range of antiarrhythmic medications including flecainide, disopyramide and amiodarone, none of which has successfully controlled his AF long term. Glyn stopped taking amiodarone 3 months ago after being on the medication for a year and experiencing side effects including horrible nightmares, a dry mouth, and a terrible dry cough;. The drug also made him more susceptible to direct sunlight.
Last year, in an attempt to regulate his heartbeat, Glyn had 2 unsuccessful catheter ablations. These operations, lasting 6 hours, were carried out without anaesthetic and Glyn describes them as very, very painful;. He then had a pacemaker fitted and a further ablation which surgeons hoped would cure the problem;. Unfortunately he is still getting palpitations which last up to 3 hours in the morning leaving him feeling exhausted and dizzy. For Glyn, surgery has made his condition worse, not better;. He believes that the longer you have AF the harder it is to treat and is frustrated that it took so long before a decision was made to try surgical procedures to treat his condition.
With a family history of stroke, Glyn is only too aware of his increased risk of having a stroke with AF. He was prescribed warfarin a year ago after raising the issue with his cardiologist. He also takes a cholesterol tablet every night to keep his arteries clear; and prevent a heart attack. To further minimise his risk of stroke, he eats a low fat diet of mainly white meat and fish, has given up alcohol, and has never smoked.
AF has had a big impact on Glyn, affecting his private life as well as his work life. He has felt anxious and depressed and unable to plan a long term future with confidence. Having a special needs teenage son has added to his concerns about how he will cope. Despite wanting to work, he has been on sick leave for 15 months. As he says, you can’t go into work when you;ve got a pulse of 120, 130;. Yet he admits it’s hard to get this across to authorities. Recently called to attend a job assessment at his local job centre, Glyn has asked for a letter from his GP to explain why it is impossible for him to work.
Glyn is critical of the care he has received since his diagnosis. The 10 minute consultation time in clinics has been inadequate to take on board; his worries and concerns, and he describes the after care following his operations as very poor;. The 6 month gap between his last operation and a follow-up appointment with his cardiologist has left him feeling concerned and insecure, and attempts to phone the hospital for advice have proven unsatisfactory. Glyn has been left in no man’s land;, unsure what his options are and facing an uncertain future.
Interview held 13/03/12