My AF experience

Posted , 6 users are following.

Hello folks.

This is a summary of my experiences with AF.

I hope that some on here may find it helpful to read of someone else's experiences.

If there is one thing that I have definitely learned from my experience with AF, it is that there do not seem to be any hard and fast rules, every experience is different, and my advice to anyone suffering from it, or concerned that they may be suffering with it, is to just try and find out as much as you can and keep asking questions.

I am happy to respond to any questions or comments posted on here. I do not make myself out to be an expert, and I am not offering medical advice, all I can do is speak from my personal experiences.

Looking back, I recall very short episodes of atrial fibrilation throughout my childhood. They never lasted more than a couple of beats and I didn't pay too much attention to them. I remember when I was about 17 going into fibrilation during a rugby match - that was the first prolonged episode but I still didn't know what it was and just put it down to the physical activity.

Then, in 1994 or 1995, in the year after graduating from uni, I started to get my first serious attacks. To begin with they invariably followed being \"rat arsed\" the night before. I remember my first serious attack graphically. I woke up in the middle of the night with my heart racing and beating with a completely out of control rhythm. I was terrified, but didn't do anything but just sit up in bed all night waiting for morning.

Several visits to the doctor and a weekly heart monitor later, I was still none the wiser and was told by a very impatient doctor that there was nothing wrong with me. The problem was, the symptoms (whilst severe) were very sporadic, and unless I was actually in the middle of an attack whilst seeing a doctor, they couldn't diagnose it.

A few years went by and by this time I was working in London, and back in 98 or 99 I had an attack whilst at work after being on the p*ss the night before. I went to casualty and this was the first time that any evidence of my condition was captured. I was in fibrilation when seen by an A&E doctor and it was caught on ECG.

Several visitis to the doctors later and after various tests I was diganosed with Atrial Fibrilation and was put on anti-arrhythmic drugs and offered a procedure called Catheter ablation. This involves inserting a catheter into the femoral vein in the right groin. An electrode is then inserted into the catheter, up the femoral vein into the righ atrium, piercing through the septum and into the left atrium. From there they can detect the overactive zones in and around the left atrium and zap them to deactivate them.

I didn't like the sound of that, and at the time, my condition was well controlled by the drugs with no side effecs, although I would still get some symptoms after consumption of lots of alcohol. I decided not to go ahead with the operation, and just kept taking the drugs which allowed me to live a pretty normal life for several years.

However, the drugs became less and less effective as time went by, and by late 2005 I was coming to the realisation that the catheter ablation procedure was really the only way forward for me. So, I was put on the waiting list, and had the catheter ablation procedure at St Bart's in October 2006.

I turned up at Barts the afternoon before my procedure and they put an endoscope down my throat (can't remember why!). I don't remember much about this as they gave me a drug which put me to sleep and made me forget about the whole procedure. After sleeping off the effects of the drug I woke up and went out to dinner with my parents and my girlfriend (now my wife!), I even had a beer. Then it was back to the hospital and to bed before my operation early next morning. I was quite nervous and one of the blokes on my ward snored extremely loudly and so i had hardly any sleep.

I awoke the next morning in fibrilation. This was ideal I was told, as it would make it easier to detect the zones in my heart which needed dactivating. I was handed a razor and told to give myself a \"brazilian\". I was then put on a wheely bed and wheeled down to the operating theatre. It was somewhere down in the basement of St Bart's and the operating theatre looked like the deck of a spaceship. I lay completely naked on the bed, a paper towel was placed over my groin to protect my modesty, and after some local anaesthetic in my groin they started to insert the catheter. I didn't feel any pain but was conscious that it seemed to be taking ages and that alot of force was being used - I later learned that they had mistakenly punctured my femoral artery several times and I was bleeding quite alot.

There were half a dozen or so screens overhead and I could see various images on them, but none of them made any sense to me. Once the catheter was in they told me to lay completely still as the electrode made it's way into my left atrium. I had no sensation of this. Once it was in place they warned me that they were about to start the \"zapping\", and then they did. At first, the pain wasn't too bad and only lasted when they were actually doing the zapping which was in short bursts every few minutes. It was more of a discomfort than real pain. However, it got worse with each batch of zapping until all of a sudden, on about the sixth burst, what felt like a physical ball of pain grew in my torso and then seemed to rush upwards through my neck and head. It was time to ask for some drugs!

Freshly drugged, the pain was very much subdued and the rest of the procedure proceeded without further incident until the last few bursts when the pain was starting to make a comeback. I was about to ask for some more drugs but then it was all over. Throughout the procedure I could feel the rhythm of my heart becoming increasingly regular, until by the end I had no symptoms of fibrilation at all.

I was wheeled back up to the ward and put to bed. I actually felt really good if a little tired and tender in my groin. I spent the rest of the day in bed and various visitors came to see me. As the day proceded I began to feel a little under the weather, until by evening I felt very fluey and had chest pains. The next morning I was turfed out of bed at about 6am as I was being discharged that day and the bed had to be turned around for the next patient. I gout out of bed and realised that I was caked in blood from the waist down. The blood had been festering all night and I stank! I attach a picture of my groin which was taken a ouple of days after the procedure.

I had a shower and got dressed and then waited for hours to be examined by a doctore before being discharged. I felt awful, like really bad flu but with extra added chest pains every time I breathed in. My girlfriend came to get me and we got a taxi home, where my parents were waiting. I went straight to bed and slept for a few hours. I felt quite ill for few days more, but after a few days the chest pains had disappeared and I felt alot better. My groin remained very tender for a few weeks. Two weeks after my op I was back at work and getting better by the day. About 4 weeks after the op my groin was totally healed.

I was still having heart rhythm disturbances and I was put on warfarin which didn't make me feel good. I was told it would take maybe 6 months for the heart rhythm to totally settle down. After a few months I stopped the warfarin which was a relief. Around April 2007 I felt pretty good and was given the all clear. Great...

...until May, just before my stag doo, when I had an attack of what was later diagnosed as viral pericarditis - Flu like symptoms and chest paind every time I breathed in...sounds familiar!

I had repeated attacks throught the rest of 2007 and then up until Easter 2008, and I haven't had one since.

It seems that the reason I was not feeling well straight after my op was not the after effects of the op itself, but by complete coincidence I had contracted a viral infection in my heart: actually, they think I had probably had the virus for years (apparently, 80% of adults in the UK have the virus), it was just the trauma of the operation that allowed the virus to get a foothold in my heart.

The virus seems to have burnt itself out now as it has now been 7 months since my last attack, so, fingers crossed, I won't get another attack.

So, it has been quite a rough ride over the last two years. I still don't know if the operation was a complete success. Thing is, the viral pericarditis also causes heart rhythm disturbances, and so I do not know if the symptoms I am continuing to experience are due to the pericarditis or to residual atrial fibrilation. It may be that another ablation procedure is required.

So, at the moment it's a waiting game, just waiting to see how things pan out. I've just got back from climbing Kilimanjaro, so that was an extra special achievement for me given my health issues.

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7 Replies

  • Posted

    Hi Mike, your post is some time ago but I am just posting on the offchance that you still come here. I am an English 30 yr Afibber who has just had an ablation and plan to climb Kili in jan 2010 - so lots in common! I would love to swap notes so to speak, esp how you prepared for kili and whether you were on drugs tc then. Hope you're still looking here. My email address is **** (had to break it up to avoid spam).

    [color=green:c98bffa772][size=9:c98bffa772][i:c98bffa772][b:c98bffa772](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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  • Posted

    Hi

    I read your story Mike and found it very interesting. I am 33 yrs old and have suffered with AF and possibly flutter too for at least 12 yrs.

    I am reassured to see that I am not the only young one with this because so often its pointed out how young I am to have this and its a bit unnerving.

    I hope you are feeling well now. Lisa

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  • Posted

    Hi All,

    Well, I am a 36 year old male who was just diagnosed with AF yesterday. I have suffered from short bouts of palpitations for years and years (I have memories of these attacks back in my teens), coupled with a vague sense of \"hollowness\" in my chest, and nearly always after being out on the p*ss and not having enough sleep. I am currently on the \"wait and see, do nothing\" approach as I believe I can currently control this through lifestyle, and because my occurrences are farily rare and tend to last no more than 20 minutes (often less)

    I suppose I am really posting because it is extremely reassuring to hear people out there who are in my age group after being told by the Doctor that it was practically unheard of under the age of 65.

    So thankyou, I guess, it helps to know I am not alone.

    D

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  • Posted

    Hi Guys,

    I can totally relate to this, I first started getting sudden massive palpitations, irregular heartbeats and dizziness way back in 2001 and despite undergoing every test (and there was me thinking that ultrasound was just for expectant mothers) this could not be found as it was intermittent. They came on at random and stopped as quickly as they started no obvious cause either.

    The doctor basically said 'go away and stop worrying' and I got the distinct impression that they believed that because I was young it was impossible for there to be anything wrong with my heart.

    So I did go away. And I tried to stop worrying, but the attacks kept on coming and this didn’t help. I carried on with my life as normally as I could, by early 2010 I was all but used to them and didn’t get overly worried until the last day in January of that year when, whilst watching TV I had another attack of this still unknown condition. At first it was like it had always been - just a little uncomfortable but it then started getting really violent, my heart was almost trying to jump right out of my chest and I was also in quite a lot of pain - this was a touch worrying.

    I then dithered for a bit, I didn’t want to call an ambulance as I still believed that this attack was the same as the ones before but as it was getting painful I rang NHS direct to see if there was any way of stopping it, they then sent a paramedic, I guess to be on the safe side.

    Now, up until this point I had believed strongly in the skills of NHS staff, they’d always been good in every other respect but when this clown turned up all that took a hefty blow. When he came I was just about able to let him in and then sat down seriously out of breath and shaking like a pooing dog, he connected his ECG machine up and for the first time ever, recorded my condition - YAAAY!! That gave me some consolation - now at last I had the golden evidence that I really was not well.

    then this chap started to do some dithering of his own, he really didn’t seem to know what to do next which didn’t exactly fill me with confidence, eventually he sighed and said 'I'll have to treat you' 'that be nice' I gasped.

    So he radioed for a full size ambulance as he’d only turned up in an estate car and tried to put a cannular into the back of my hand (the needle valvey thing they use to pump drugs into you with) then as is the procedure he pumped in some saline to clear the vein, I watched in fascination as the back of my hand swelled up like a grapefruit - he’d missed the vein altogether.

    Next thing, needle out, blood and saline all over me and my couch, great. It was at this point that I dropped back into normal rhythm and as quickly as he could he radioed back to cancel the ambulance and started packing his stuff away, then he filled out a form which I got a copy of and said I needed to see my GP and then he went. I don’t know if this was entirely the right course of action but it didn’t feel like it.

    ANYWAY, I went back to my GP and now armed with this golden ticket of an ECG I was referred. I went through all the tests and yet again nothing was found to be wrong and the only 'treatment' I was given was advice, minimal booze, no caffeine, no chocolate and no strawberries (yep, they’re a stimulant! I never knew either)

    So again I got the brush off really, I was at the time trying to learn to fly and this had understandably been stopped by the civil aviation authority, flying is my one and only passion so a few months later I tried again, this time with a different GP, he saw the ECG and called it a 'classic SVT' or super ventricular tachycardia, and I got referred to a very large heart centre in the midlands where I was offered ablation - YAAAY!

    So in I went, I hate hospitals but knew it had to be done to get my life back on track. Gown on I hopped onto the trolley and they wheeled me into a room which I can only describe as a set from the matrix with all its screens, pipes and wires and stuff, real scary but again it had to be done. I got a drug called madazalan which meant I forgot most of the procedure but I do recall them being in control of my heart beat and them using synthetic adrenaline to make my heart go into this irregular rhythm which they then decided was Atrial Fibrillation and not SVT as before. The consultant said that was a different kind of op and that they wouldn’t be able to do it as things stood, I was wheeled out and left to recover for a bit.

    Now, I'm on flecanide and aspirin and this has for the most part controlled it however recently I had a spell of attacks, several a day for a week or thereabouts, so I've got myself referred again to try and push for an AF based ablation, it has been argued by doctors that I could get a stroke during the op but if this carries on I’ll have one anyway!

    It's all good fun.....

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  • Posted

    A brave story and a wonderful achievement from climbing Killmanjaro - best of good health! 
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  • Posted

    Hll. First time checking back in for me for quite a while. I wonder how Slim Pickens got on.

    Well, to update my status, the pericarditis seems to have gone for good, and I am currently just on a little 2.5mg dose of bisoprolol. I get very mild symptoms these days but I've decided to just live with it and it really doesn't worry me any more.

    Best wishes to all.

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