Will you share your AF story?

We are often approached by AF patients and carers who feel they cannot share their experiences with others because nobody will understand. We tend to refer them to our online forums (like Health Unlocked and Facebook) where they meet people in similar circumstances.

We also refer them to our "case studies" section on the AF Association website. They are relieved to hear others' experiences and how they have overcome challenges.

Will you be willing to share your story? This could feature on our website, newsletters or even be put forward for media requests. Of course, you are at liberty to instruct where you would like your story to be included.

Please send us the story about your journey with AF. You never know how many people it could support.

Email: raj@afa.org.uk

8 Replies

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  • I was diagnosed just after my 36th birthday.I had a stressful time that year with family problems, work problems and financial problems. I had an office based job, I drove, I smoked and went out most weekends drinking.

    I had felt odd in the summer. I was feeling very out of breath and found that some days I struggled walking. I put it down to being older, carrying some extra weight and being a smoker. I found it difficult to concentrate at work and got tired easily.

    I began blacking out in the office. Not quite collapsing, as I was sitting down, but blacking out for seconds. Eventually I thought that I should I see the doctor at the walk in centre, as it was a Saturday and my GP centre would be closed. I was transferred by an ambulance to the hospital.

    I was admitted and told the following day that I had a heart condition called Atrial Fibrillation. I burst into tears. I had never heard of it and thought that old people had heart problems.

    I was put onto various medications including Warfarin. 3 years later, I am still taking Flecanaide and Verapamil, as well as the Warfarin. I have had a cardioversion. Flecanaide infusion and a catheter ablation. My AF comes and goes and is usually stress related. I do suffer from anxiety problems and am currently going to Anxiety sessions.

    I have online friends who I have met via AFA, but nobody really understands how this has affected me. My whole life has changed in the last 3 years as my employer paid me to leave the business in 2010. I am now a benefit claimant with no car and take a lot of medication.

  • hi, i had a stroke in march this year and im on 4mg warfrin a day, the doctor told me i have got afib, i cant drink alcohol but am still smoking , im totaly stressed out, any info please on afib.....mike.

  • I’m 66 years old, in 2009 I almost fainted at my daughters who insisted I went to hospital, they said I had Atrial Fibrilation.When I returned home I had an ECG and a Scan done which came back within the norm. Last winter was very mild and we all had flu, intestestinal flu, viruses, everything, I had difficulty breathing and thought it was asthma as we do have it in the family, or some chest problem, I eventually went to the family doctor in May with a swollen ankle and suspected thrombosis, I also asked him to check my chest and he told me my chest was clear but my heart beat was irregular. After an ECG I was diagnosed with A.fib and put on Cardicor (a betablocker) and warfarin. I have had a scan, and am now waiting to see a specialist about having an electroversion. My problem seems to be more not being able to breathe, I seem to have a blocked nose always, and a strange feeling in the upper abdomen when I can’t breathe, it happens usually when I am lifting or carrying things. I don’t get loud heartbeats, sometimes when I am laying down it sounds loud but nothing like everyone describes. I am also a bit in the dark about just how much exercise I should do, I was going to aquafit classes where we were always told to keep on and not give in. I am no longer going as it became too much for me, but would like to know to what extent I should force myself to keep on. For example should I run for the bus or wait till the next one!

  • I cannot answer your question about exercise as I have never been told anything about what I should or should not do.But I have the same feeling when lifting or carrying as you do, and have never been offered any treatment other than drugs,verapamil.digoxin and warfarin which I have been taking for four years.I needed a small operation for sinus polyps but was told they would only operate for a life-threatening complaint.I know of two people who came off their drugs for hip replacement surgery and found that they no longer had AF !! There is very little information or advice out there to help.

  • Our website is packed with booklets and information on AF, treatments and procedures. You can download them here atrialfibrillation.org.uk/p...

    Or call us for an informal chat: 01789 451 837

  • About 12 years ago I got home from work and I started feeling like my heart was trying to pound its way out of my chest. I sat down at the kitchen table waiting for my wife to get home. I had felt this before but not as strong. My wife came in about an hour later and I told her what was going on. She thought I was having a panic attack and although I had never had one it sounded about right.

    She ran me a hot bath and told me to sit in it and try to calm down. After about 30 minutes in the tub she came in and felt my heartbeat and told me to get dressed. When we got to the ER they told me that my heart rate was 165bpm and my blood pressure was 95/55. The Dr. told me that I was in A-Fib and they gave me a shot of Cardizem. After an hour my heart rate had not slowed down so they gave me another dose. Finally after 5 hours in the hospital I went back to NSR. They kept me there for 3 days (because it happened on a Friday night) and on Monday I was seen by a Cardiologist who prescribed Toprol and set an appt to see him in 2 weeks.

    From the first appt he said my heart was in good shape. He scheduled a stress test and another appt. After the stress test I saw him again and he told me again that my heart was in good shape. He said that A-Fib is a minor condition and that the Toprol should control it.

    Over the next 9 years I saw once a year and had a stress test every other year. At every appt I would tell him that the attacks were still happening and he would increase the Toprol dosage and tell me my heart was fine. During the 9 years my attacks went from once a year to 1 or 2 attacks a week which lasted about 6 to 9 hours each.

    At my last appt I told him that I was wasting my money, getting worse and nothing had been done in 9 years. So I fired him.

    2 weeks later I ended up in the ER with a heart rate of 175bpm that lasted 7 hours. They set an appt with an EP the next week. At our first meeting she Got pretty upset that I had been diagnosed with paroxysmal A-Fib 9 years before and basically nothing had been done. She looked at my many ER records and started me on warfarin, Rythmol and baby aspirin. In the first 2 months I only had 2 attacks instead of the 6 to 8 I normally would have had. She has increased the dosage of rythmol a couple of times over the last 2 years and performed a heart cath to check for blockage. I had an appt 2 months ago and during that appt she told me that I had 2 choices. She was going to have to increase my dosage again or switch me or put me on a stronger med. She explained the dangers of going to stronger and stronger meds due to the side effects, OR an Ablation. She explained the procedure and all of the benefits and dangers.

    I chose the Ablation and should be scheduled in Feb or Mar of 2013.

  • My first episode of atrial fibrillation was in January of last year (2012)

    In my memory, the day was like any other: work, home and all the small stuff in between. But when I remember back on that day some things come back. I remember walking to a meeting earlier that day and feeling oddly out of breath, but I put that to one side and carried on with the day. When I got home that evening I remember falling asleep after dinner, which I never do. That night I went to bed , exhausted and in the early hours of the following morning I woke from a dream: my heart was lurching, pounding, racing, flopping…..I took a breath and tried to convince myself that I had woken with a start and that my heart would settle….but it didn’t. My heart kept jolting and flopping, like a salmon flipping and flopping in my chest…I kept saying to myself “This is anxiety, breathe slowly and your heart will settle”…

    I lay there in the darkness and remembered all of the times I had felt my heart beat irregularly, I’ve had this since I was at school, I’ve always had palpitations, missed heartbeats, jumps, flops, and I’ve been to doctors who have told me it’s anxiety. I reassure myself with this mantra until an hour passes and I realise it’s not going away…

    In my head, all hell breaks loose, I convince myself that this is what a heart attack feels like, I leap out of bed and jump into my clothes from the evening before. Running out to my car I convince myself that to phone an ambulance would mean a 30 minute wait. Driving to the hospital, my heart is like a salmon leaping out of my chest, “I’m too young to die” I think….

    I arrive at the hospital and tell the receptionist that my heart is about to leap out of my chest. She looks at me and I feel in that moment the humanity of kindness. I’m instantly brought into the Accident and Emergency Suite. I’m connected to nodes, stickers, machines….the doctor and nurses check my heart….I hear the phrase “A Fib”…..I convince myself in the madness of the moment that it’s anxiety….but they place and oxygen mask on me and tell me to wait for the cardiologist….I now know that it’s not anxiety, I have been told for years that this is anxiety….

    Minutes feel like hours as I wait for the doctor to arrive. When she does arrive, she looks so young…I expect the words “panic attack”, “hyperventilation”, but instead I hear “atrial fibrillation” and “stroke”…I am vindicated. Although, in my mind, I am dying, I have finally had the opportunity to reverse the myth that it was anxiety, it was not anxiety, it was never anxiety….

    I am admitted. Tests follow. I tell the doctor I had an overactive thyroid as a student at Queens in Belfast. My thyroid is tested….normal. I am sent up to the cardiac ward….The consultant walks in. He announces “Well, you haven’t had a heart attack, so that’s good”….but you do have “atrial fibrillation”….I don’t react, I have no idea what it is. “We think the best course of action is to defibrillate you”…I’m instantly uneasy, I think of defibrillators, electrical rhythms, death scenes…I ask the young trainee doctor if cardioversion is safe and she says “No medical procedure is without risks”…I decide not to be cardioverted…..

    An hour later I am in a hospital bed. I am told that I will be cardioverted in the morning if my heart does not revert by itself. I spend a sleepless night in hospital, information is scant, the nurses are amazing, the doctors have neither an explanation or a leaflet to explain what is happening to me. My family visit, they are lost, the nurses are, again, amazing, but there are no doctors, just me, alone in a bed, dreading the morning…

    I have an electrocardiogram, amiodarone, food….I think I am dying…..I confide in the nurses as they come in….they tell me that I’m ok….they are kind, but in my head I’m still dying…

    I can’t sleep, dreading the morning, the cardioversion….after a sleepless night I prop myself up. A young nurse comes in and says “You’ve been in sinus rhythm for the last hour”….what she means is “Your heart has been beating like normal”….I’m ecstatic…..

    Snow has fallen. I dress, broken by the experience. I’m given Ditliaxem (Slozem). I take it. I go home, convinced that it’s going to happen again….days and night pass and I am caught in the nightmare that it will happen again…

    Almost a year on, it has not happened again. Although I go to sleep every night expecting to be woken by my heart, it has not happened. I have seen my consultant once in a year. When I visited him I had a list of questions:

    What caused it? Anxiety, stress, supplements (Vitamin D, Evening Primrose Oil). He answered “No”

    Will it come back again? He answered “Yes, it’s progressive”

    What should I do? He shrugged….

    That has been the extent of my care. I still take Diltiazem each day, I work, I live my life, I am constantly aware of my AF but not restricted by it. I have wine at the weekends, I have tea and coffee and other triggers…Life goes on…

    My advice to anyone who is newly diagnosed is this:

    You might feel that you are alone.

    Your GP, your consultant etc will not be there for you.

    Few people will understand what you have gone through.

    But remember, you are not alone.

    Lots of people have AF.

    It’s part of you, but not all of you. Live the life you lived before AF…

  • I had palpitations as far back as 1980 and went to my doctor at the time who said "every one gets this do not worry" it was not until 1992 when I went into hospital with double pneumonia that they saw that my heart was all over the place and while in hospital being treated for my pneumonia I was put on Digoxin. I am not good with medicines and have a few allergies. I was offered a new procedure called an Ablation but it was only 20% success rate then and could only be done in 2 hospitals in the UK at the time. I have had 9 cardio versions and 3 ablations and many tablet changes to date and will be having a Pace and Ablate in 2014 to make me pacemaker dependent. Ablations are now done in many hospitals and have a far higher success rate. Due to other health issues I am afraid it has not been a straight path for me.

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