Quality of life - PAF

I was mulling over recent comments where doctors have told some of our fellow sufferers that AF is not life threatening perse and they should in essence go home and put up and shut up and stating that any treatment was just intended to improve quality of life.

Surely that is the case with any medical condition from a common cold right up to the serious stuff.

The medical profession is not only there to deal with life threatening problems.

To those who have been given this brush off, my advice is do not accept the status quo but keep plugging away.


34 Replies

  • I agree wholeheartedly. An awful lot of things won't kill us but need to be managed and controlled and I try to see the comments as sometimes meaning to be helful but failing.

    My cardiologist told me recently that 'this won't kill you, you know' and my EP said that persistent AF isn't so bad. In the context of the conversations, I understand the references and the implications of what they were saying. The problem for many people is when these views are accompanied by inaction or a brush off as you say.

    It is one of the main reasons I feel psychological support for AF patients would be a massive step forward for so many of us.

  • How right you are Finvola!

    I think that they have no idea what mental torture some have to endure. I feel psychological support would be so valuable.

    I am a PAF person as I guess you now realise. For me each time I am in AF my mind goes into overdrive thinking of the total fear of being in permanent AF yet from this forum I have learnt just how many poor souls are in that situation.

    In the past days when I was in AF again this is how I felt - desperate and worried.

    I have had PAF for 25 years and for me it does not get any easier to deal with mentally and it doesn't matter how many people tell me it won't kill me!

    Yet having negotiated a cardioversion on Tuesday I am now thinking logically again as I am now in NSR again.


  • I no what you mean had a paf problem for 35 years when in nsr feel nomal and foget how bad you feel when your in af tablets change now back on bisoprolol and eliquis apixaban for blood thinning. now today they want me to start taking Ramipril not keen to take more pills managed for 30 years taken nothing since hospitals got involved have to take more and more pills they tried me on amiodarone for 2 months god I was ill on them.

  • Yes Amiodarone made me feel awful too. I came off it very quickly. I also could not cope with Sotalol.

    Now on Flecainide, Bisoprolol and Warfarin.


  • My QOL is rubbish so tired all of the time I went to see an EP privately in 2014 he diagnosed AF he gave me Flecainide as a PIP. I had to go privately as urgent waiting list to see EP on the NHS in Wales was ten months I did see the NHS EP after waiting 9 months and explained the situation he said well you have been told you AF and It won't kill you and that was that. so now I have no EP cant get to see my GP as it has all be changed to triage just feel as if I have been left to get on with it. My mum had AF at the age of 65 and no it didn't kill her but at 75 she had died of heart failure I don't think the doctors take AF seriously as long as they have the stroke risk covered they don't seem to think its a problem (try living with it)

  • This is outrageous but is typical of the point I raised with my "quality of life" post.

    It is a post code lottery. You are entitled to be referred to any hospital in the country and I think you should insist that this is done. My guess is that the nearest centre of excellence to you is Bristol see if you can get your GP to refer you there.

    I know from personal experience that a good EP will look after you as this is the case for me. I 'only' have PAF and live very near to a centre of excellence for rhythm problems and they take me very seriously. In addition I have pitched up at A&E on a number of occasions with AF when I cannot get it to revert to NSR with PIP and have been treated with respect and the greatest care.

    Keep plugging you deserve more.


  • This is so but unfortunately, not in Wales. At least certainly not outside Wales so you may have the right to go go to Cardiff instead of Bangor but not to Bristol as it is in England. However if the operation is life saving and can not be done in Wales then they will pay for you to go to England. Groan ! Unless things have changed very recently. X

  • Good point I forgot that there is a different health system in Wales. This is really not fair.


  • The EP that I saw privately was at the Spire in Bristol he was excellent I just wish I lived in Bristol. it really is difficult here in wales you cant even make an appointment a to see a GP

  • I agree, psychological support is so important. Fortunately my EP was sensitive to this. My arrhythmia episodes when they really kick in cause me to be blue lighted into hospital with intravenous morphine for the excruciating chest pain, chemical conversion and days being stabilised and monitored. Fortunately these are not too often.

    In between I have almost daily short sharp bursts of arrhythmia and ectopics so am reminded constantly and worry that one will trigger a big episode.

    Because of this my EP wrote to my GP requesting a referral to a clinical psychologist specialising in long term health conditions. These sessions have just finished and taking place over the past 16 months have kept me grounded to a great extent. The fear is still there especially when away on holiday etc but the coping mechanisms have been very useful.

    If only all medics took the view of my EP we might all be a lot better off. I wonder if the AfA might be in a position to canvass this need to the medical fraternity.

  • Yes, I do so agree, its good that Flecainide controls my long episodes but almost daily the little bursts lasting seconds mean its ever really out of my mind. Cant remember a day when I didnt think about it but I know there are many worse off than me. Best wishes, Pat

  • I think many of us PAF suffers have these regular Ectopic beats so that our dear old heart to remind us that it hasn't gone away. Hey Ho there goes another one just on cue.

    I agree it is very difficult not to keep thinking about it.


  • I don't think it is totally a matter of choice or what the medics do or say - having had some interaction with my local hospital and GP surgery it is really about resources or the lack of them. I think the AFA do make a tremendous difference and represent us very well at all levels of government but we also have to face realities, there will be no money for psychological support unless we pay for it.

    So what about the AFA employing a counsellor for telephone or email confidential Counselling? What more could they do to offer direct support, as other charitable support groups do? There is loads of info on drugs & procedures and hardly anything on the practical and psychological sides of things.

    What more could we do for ourselves? This forum is a godsend for many but I've met also many people who wouldn't dream of coming on an online forum and only want to talk to 'experts' or face to face. I have met some myself on an informal 1:1 basis.

    How do you cope - what helps you the most to cope?

    I know that when I was having an AF episode and on my own what I would have liked is being able to phone someone who knew from experience what I was going through, wouldn't judge or over react nor the opposite and be dismissive - just be there to listen empathically - not to do anything because if I had been that worried I would ring 999.

    So what exactly would YOU want? Assuming that there is no medical magic bullet to stop episodes and you do have to live with it, having explored all options, done all the lifestyle changes you can and tried everything else you can think of, which is sometimes the case. How do you come to acceptance and adjustment? I am asking seriously.

    You can demand all you like and yes it is unfair and people suffer but the money will go to centres of excellence which are based in the big cities so London, Birmingham, Manchester and Liverpool will continue to get the money at the expense of 'the limbs' of the country - as one person described it. (Living in the SW the local expression for anywhere out of county is termed 'up country'.)

    Unfortunately things are going to get a whole lot worse in the NHS very soon. And the choices of what and where to cut are heartbreaking, no way would I want to be making them. The forthcoming cuts, which have already had a tremendous affect locally - our CGC has to cut £40M for this years budget - YES - £40M this year alone! And that is what they have to save from their budget!

    Word is that staff are really demoralized as they feel they are so constrained by what they can offer. Last year our local hospital could only perform ablations for less than 6 months because of lack of resources and drugs come out of GPs budgets don't forget somtherenis often and ping pong between hospital consultant and GP with patient batted between them.

    So it is economic & political as well as clinical.

    There is no joined up thinking, there is no co-ordinated approach and more and more people demanding more and more complicated and expensive drugs and procedures,

    Something is going to give, and relatively soon whatever any government may say.

    Our local and very excellent out of hours cover has just been taken away from our local GPs and awarded through a tendering system to a large private company based in Yorkshire. This means the GPs will lose income and patients will get very upset as we will have to go through the 111 system. Our local GPs worked together to provide for the governments' new dictat of 24/7 cover, changing their IT systems to be compatible, which was expensive and at their own cost, and for what? And how many new stories about this? Hardly any because this is going to be a death by 1,000 small cuts and the government will still say they are pouring more money into the NHS.

    Rant over.........grrrrrrrrr!

  • Excellent post CD - depressing reality unfortunately. I feel that psychological support at diagnosis would, in the long run, actually save time, medical resources and money. My NHS care has been excellent medically - from GP, Cardiologist and EP and I have a care plan in place, so I am very fortunate.

    Many of my own visits to hospital and physicians could have either been avoided completely or been differently focussed (especially at the start) if I'd had some idea of what was happening or likely to happen under certain circumstances. Also I suspect an awful lot of my heart and health problems in the first year were caused by anxiety, worry and fear for the future - these are the areas which, if supported, might actually cut the medical consultations.

    I live in the 'fingertip' of the country and I know how desperately stretched our resources are in N Ireland, hence my belief that a holistic approach might be a more cost effective one in the long run.

  • Just in response to one of CDreamer's comments - I did call the AFA helpline when first diagnosed and a bit upset. The lady I spoke with was vague and unhelpful. She even went as from as to say she was new and didn't really know when I asked if AF was common in people my age (49).

    Needless to say I won't be calling again. I've had far more help advice and support, in addition to hard practical facts, from the 'amateurs ' on this forum than anywhere else.

  • Sounds like you were unlucky as I had great help from them but that was some years ago and I know there have been a lot of changes in AFA because of personal issues and changes.

    So what would you have found helpful? What did you want from that call? Sounds like a bit of reassurance that you weren't the only person in the world who was 49 and had AF, well I can relate to that!

    The charity for my other condition does employ a counsellor for telephone advice AND they have a full-time benefits advisor for the economic and practical stuff which many people make use of and appreciate.

  • You're not potty, Pete, you're spot on 😀. The fact it may not be directly life-threatening is an irrelevance. Nearly everything we go to the doctor for isn't life-threatening. In terms of our GP's locally, they just don't understand it. Funny really, when electrics is a core part of our health, it should be high on the list. Not much point in having a V8 engine without spark plugs.

  • Unfortunately it is very true about not understanding electrics. That is not only true in the medical field but in life generally, even by very competent engineers in other fields. One of the problems is that you can't see it but know what happens to electrical devices. I know because I originally was a professional design engineer. However what I used to do was explain by citing plumbing and mechanical parallels / phenomenon because people can relate to those. Doesn't work in all cases!!!


    I am glad my post has stimulated this conversation on this subject which CD has so eloquently expanded upon.

    I am going to try and simplify my point.

    For me a great part of this issue is not necessarily professional or complex support systems which would of course be very appreciated and welcome by many but funding or motivation does not allow.

    For me it is simply the attitude of the professionals who, when they respond to you with empathy, can help enormously.

    However, when as so often is the case, they either do not listen, are dismissive or if they do respond offer comments such as "you will just have to deal with it" then an individual can be left in a wretched state mentally. It must also be remembered that not all sufferers are intellectually blessed or are articulate.

    In the 25 years I have suffered from PAF I have encountered both ends of the spectrum.


  • It can equally apply to those who are articulate and intellectually blessed!!!

  • Agreed


  • Obviously they've not had it.

  • Yes you are right.

    But to be fair I think the majority of doctors and nurses do have empathy - that is why they work in the medical profession caring for others.


  • I don't know about them being the majority. I would say the minority. Some lack any empathy or sympathy. As I have said some have as much sympathy and empathy as a chieftain tank!!!!

  • To be true I do not have statistics to prove it either way but I, like you have had some very bad and some very good experiences.

    Right at the beginning 25 years ago, I overheard a doctor describe me in a dismissive manner as "a frightened rabbit in the headlights"

    I was scared I agree I had never had palpitations before. I was wired up, couldn't go to wee as my brain packed up and spent 5 days in a hospital bed while they decided what to do with me explaining very little.

    4 years ago a retiring EP told me that I had to go away and put up with it suggesting that I would most probably slip into permanent AF soon.

    2 years later whilst in hospital for my umpteenth cardioversion a new EP sent a message to me that he felt that they could do more for me and that he would put me on the list for another ablation.

    Since then I have had good treatment and communication.

    I do think that positive communication is paramount and this is so often sadly lacking.


  • I had a massive stroke as the direct result of PAF and am living with the consequences -having limited mobility on left side.

  • Yes the 'go away and put up with it' attitude is not acceptable as even with anticoagulants AF sufferers are more likely to suffer strokes than those with out it.

    So sorry to hear your story.


  • Well!

    There was me trying to be understanding about "The System" and saying how well I am being treated in my locality.

    I just got a call from Cardiac Admissions department at the hospital responding to a message I left earlier, to tell me that they still are unable to advise me when my rescheduled ablation (following Tuesday's 11th hour cancellation) will take place.

    In a not so subtle way I was told to stop bothering them and they would phone me when they have a date.

    So back to Patient's patience for me.

    Put up and shut up and stop bothering me!


  • Proves the points raised in this thread!! It wouldn't have been beyond the scope of Admissions to have had a well worded REASSURING message ready prepared for someone in your position, not only ensuring that you did put up and shut up(!!) but that you felt things were progressing.

    I am sure admissions get pestered - I've done it - but the response sometimes makes pestering worse by either being dismissive or tight lipped.

  • Hello Finvola

    How right you are.

    All I was told was that she couldn't tell me anything and that she was unsure when the powers that be would tell her some dates.

    It is all about getting an anaesthetist.

    On Tuesday when they cancelled the Registrar told me that he would try and find out that day and asked if I had any holiday planned. The ward sister said something like " see you in a couple of weeks" so I got my hopes up.

    Not sure what to do now as I don't want to antagonise her either.

    How glad I am that I negotiated a cardioverson. However, as always in PAF In am now dreading every ectopic heartbeat.


  • My words not theirs!

  • @potttypete1

    HI If a doctor told you afib is not life threatening go see another doctro see an electrophysiologist--an md who specializes in life threatening abnormal heart rhythms.

    First of all afib gives you a 4-5 tijmes greater risk of having a stroke, and your normal doctor would want your nir to be between 2.0 and 2.5, secondly besides afib, other abnormal rhthyms may be occurring at the same time,. I think you should get a very good check up and evaluation with a very good ( the best you can find) electrophysiologist.

  • In the uk they want someone's INR to be in the 2.0 to 3.0 range and preferably around 2.5. For some people they want tge range to be 2.5 to 3.5 so that if it is towards the bottom end of the range it doesn't fall below 2.0 and consequently not protected.

  • It wasn't my doctor who said this. My post was promoted by other members of this forum who clearly have been treated this way.

    Thanks for your reply.


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