Raising awareness of cardiac arrhythmias to improve quality of life for people living with Atrial Fibrillation

I share my story in the hope that it reaches out to everyone and may help someone else who reads it.  

I can clearly remember my very first attack of what I now know was Atrial Fibrillation. April 1996. I was young, a county tennis player, non-smoker and only drank the occasional glass of red wine. Life felt pretty good and I was enjoying every moment of it - until 'the beast' struck and my whole life changed. I had a successful career in teaching and had spent that Wednesday morning taking a group of children to collect fossils on the beach. The day was clear and calm, the children loved exploring and we had a great time making our discoveries before returning to school for lunch.

That afternoon we began our research investigations. I suddenly turned my head to talk to one of the children and wham - without warning, over the next hour, I experienced the following symptoms:

  • tight chest and difficulty breathing
  • a very fast irregular heart rate
  • nausea
  • dizziness
  • soaring levels of anxiety

What on earth had happened? I tried to relax and sit quietly, very difficult as you can imagine,  but eventually I had no choice other than to leave early and get  an appointment at my local doctors practice. Unfortunately my usual GP was not available and I saw a locum who knew very little about me. I was told I was suffering from stress, given a relaxation tape and  advised that I needed  to go home and unwind. I did not feel particularly stressed but as the GP had shown no undue concern I was prepared to follow the advice I had been given. The attack left me feeling tired and also anxious in case it should happen again. Which it did six weeks later.

That was the beginning of a very, very long, hard   and tiring road which eventually culminated in surgery in 2005. Lost years and continuous misdiagnosis. Years of self doubt and the total destruction of any self-esteem suffered by anyone (mis)diagnosed as having a 'mental health' problem. Only those people who have suffered long bouts of Atrial Fibrillation, along with their family and friends, can truly understand how debilitating and life changing this condition can be.

Due to recurrent attacks which left me completely debilitated for long periods of time I was eventually forced to leave my profession. Despite being given numerous anti-anxiety and anti-depressant drugs the 'panic attacks' continued over the next eight years, some of them lasting for up to eight hours. The diagnoses I was given over the years continues to astound me:

  • anxiety
  • depression
  • panic attacks
  • epilepsy
  • schizophrenia ( which I questioned)
  • agoraphobia
  • bi-polar depression

Eventually, in May 2004 I experienced one of the worst attacks. Home alone, I phoned 999 and the ambulance crew arrived to find me semi-conscious with a very low blood pressure and an irregular heart beat. They could not move me for fear of cardiac arrest. Eventually I was taken to A&E at my local hospital. - by this time the attack had ceased.

Two days later, during the night, I experienced another serious attack and was again taken to A&E. Again, by the time I arrived my heart had returned to normal rhythm. I was kept in overnight and placed on a monitor. I experienced futher 'attacks' from time to time throughout the night but was told that the tracings were 'only interference' on the machine. By the next morning I was distraught, tired, anxious, very scared, unsure of what was happening to me and dressed in only a pair of thin pyjamas, with no money to get home, I was discharged.

It was at this point in time that I decided I had a major problem and knew I had to follow my own instincts. I contacted my GP and insisted on a private referral to a cardiac specialist at the James Cook University Hospital. I was seen the following Monday by Dr J A Hall. I arrived at the hospital in the midst of a full blown attack, placed immediately on an echocardiogram and Dr Hall explained that what I was suffering from was Atrial Fibrillation. I was admitted to the hospital's High Monitor unit and placed on drug therapy.

To actually have a correct diagnosis after eight years of pure hell was a huge relief, but coupled with that was the anger and frustration for those utter lost years of ill health and the stigma that had surrounded my illness.

By this time drug therapy proved to be unsuccessful due to the frequency of the attacks and the side effects I was experiencing. Circumferential pulmonary vein ablation was my only way forward. My surgery took place in January 2005. Dr Adam Fitzpackrick from the Manchester Heart Centre, working with Dr Nick Linker performed a complicated and risky procedure which lasted for five and a half hours. This was the first successful pulmonary vein ablation undertaken at the JCUH.

My life is beginning to return to some semblance of the equilibrium I lost before my diagnosis, although I continue to suffer bouts of anxiety related to the trauma of my experiences. I do not need to take any heart medication at all. I am indebted to Dr Hall and all his team for their ongoing support through two critical illnesses. Without their commitment I would not be here today.