Thoughtful ramble about AF - why is it not taken more seriously?

A few things have happened in the past few of days which have made me think around the subject of AF.....

First, several ships sinking and several aircrashes reported.

Then turning 70.

Then finding out that a dear friend has terminal cancer and is not expected to live until next Christmas.

The terrorist attacks.

The post on Any Questions asking why AF is not treated seriously enough for us.

Finally (warned you about ramble) the post from Duckpopper about fear and depression.

What I'm thinking is that AF is not taken seriously by many of the medical profession is that it isn't fatal immediately and does not even seem to cause severe disability in most cases, unlike diabetes say. Also as so many of us are 70 or older there is an attitude of 'reached your three score and ten' ( my mother always said that was your allotted span and life after that was a bonus!).

There is also an IBS attitude that we have been diagnosed with a non life threatening condition and we should go away and keep taking the pills and manage it ourselves.

Then there is the 'all in the mind' attitude both before and after diagnosis where your physical symptoms are first of all not taken seriously and then not considered to warrant your distress.

So how do we see it?

We are terrorised by the condition!

What if the doctors are wrong and I really have a heartstopping condition they missed? When is the next episode going to happen? When will this one stop? How do I balance out calling for help against being seen as a neurotic nuisance? What bad side effects will the drugs have? What are the longterm effects of the condition and the drugs? How can I get any consideration or sympathy when usually there is nothing to see? Shall I take a chance on a procedure that frightens me? How can I deal with the grief of knowing my quality of life has been changed forever?

Clearly all the statistics in the world are not going to make someone living in fear and distress change their feelings (nothing will get me on a ship!) but we are all so thankful for this community that helps us cope.

17 Replies

oldestnewest
  • I think you said it for all of us really. What you must understand is that until AF Association came along it was even worse out there. AF-A have been working to improve understanding and treatment at all levels since 2007. We have an All Party Parliamentary Group on AF which has the support of many MPs and works to put pressure on NHS to improve detection and treatment. We have successfully lobbied NICE for new treatments to be approved and work with drug companies to increase awareness so you are not alone out there.

    You have to understand that until say 20 years ago AF was considered a benign nuisance and yes you would be told to go and get on with it. Things are improving but Rome wasn't built in a day and none of us are complacent. WE still have much to do and by WE I mean all of us! You have as much responsibility as anybody here to educate those around you and work for the common good. This is at all levels whether discussing your condition with friends or your cardiologist. You need to educate yourself as much as possible so that you can do so for others in the knowledge that you are helping yourself as well as those who follow us.

    I know that one of the most impacting aspects is the mental one and I have been talking about this for years. Before AF-A when I was on one of the committees at BHF it was my hobby horse to get more psychological support for patients with AF but sadly it is still not adequate. Arrhythmia Nurse Specialists make a huge difference to patient support but of course there are never enough. This forum provides (I hope) mutual support for members throughout the world not just in UK and again, I hope, can give a positive message to members that life goes on. As Spock might have said "It's life Jim but not as we know it" but we can still enjoy it if we put aside our fears.

    Bob

  • Bob you are so right. As ever the wise old owl. Thank you for all the time you give to help promote AF and for sharing your amazing wealth of knowledge.

    Jean

  • Hi Buffafly - Well said, I agree with all you have written. I too don't think AF is given the status it deserves.

    My friends tell my how well I look when in the middle of an attack of tachycardia ( I feel dreadful). Unless each attack goes on for months we are likely to still look well. The other thing I ponder on is all the different types of AF and the fact we could all be thinking we understand how someone else is feeling with it, when theirs is worse or not so severe as symptoms we experience. When mine first started and each attack of tachycardia lasted 6-12 hours I though that was bad and that's what I though was the worst it could get, until my heart began to be constantly racing for months. Before then I had no idea that other peoples attacks were that much different to mine.

    I think people who live on their own, have a lot more anxiety too as there's no security from another person being there to give support and no one to watch that you don't have a stroke.

    Also, I know from my experiences how poorly you can feel for months after an ablation and I really can't imagine how people who have a physical job manage to go back to work within weeks, they must find it so difficult.

    The community on this site means the world to me. The support and advice we get helps so much, thank goodness we have it and thank you to all the lovely people so willing to respond to a question.

    I look forward to everyone elses ponderings

    Jean

  • Well written, Buffafly, every point you've made is spot-on.

    AF seems to me to be the hidden condition in the health service, certainly in Northern Ireland. Over the past year I have checked health centres and hospitals for displayed information on AF or palpitations or uneven pulse - nothing. No posters, leaflets or advice of any kind. I suspect that our parents were told they had palpitations and should get on with their lives - and in some places that is still the attitude.

    Without the AFA website and this forum, I would have had a much worse time after diagnosis - it really is a wonderful community.

  • I agree with all you say Buffaly - I am relatively new to the diagnosis of AF - and the knowledge out there of some GP's and Doctors in General Hospitals have added greatly to my confusion and worry.

    Recently I had contact with two Drs who came to the end of my General Hospital bed and asked me why I had had an ablation because they don't work.... Their approach caused me to "wobble" mentally and doubt myself.

    I have learnt from the AFA etc that an ablation can reduce symptoms or sort it for a period of time that will give back a better quality of life. To me that is so worth it and I know it is to others.

    I am still recovering from my ablation (its early days) and I am feeling better than I previously did.

    Coming to terms that heart repair is a slow process myself is difficult and for those around me.

    Explaining to family and friends and their realization (or not because they find it too hard to digest) pulls me down but this forum has been so helpful to know I am not alone - I and my family had never heard of AF, PAF etc until I was diagnosed...

    I don't know what the future holds, but I really feel better for trying....

    The care I received at the specialist Cardiology Hospital has been a very positive experience and I am very thankful that there are Specialists who work in Cardiology and who are finding ways of dealing with our complexities of the heart...

    It is very much as Bob says "Life Jim but not as we know it" and I will try to keep that in mind when I am feeling down :))

    Mickey

  • Good post Mickey,

    I think in many ways the problem with AF is not that it is hidden, but that far too many doctors think they understand it and haven't got a clue (like the ones at the end of your bed).

    That worries me more in some respects, because unless they educate themselves what chance have their patients got? At least a doctor who does not know is more likely to refer.

    We see far too many stories here of GPs and Cardiologists poohoo-ing AF

    Be well

    Ian

  • New word there Ian, I like it!

  • Thank you Ian - You too.

    Mickey

  • I agree with your comment " I really feel better for trying". I decided to go for ablation after much thinking round the pros and cons simply because I need to know in my own mind that I have tried everything. If it doesn't work so be it and I will just have to adapt and get on with life but I will at least have tried to conquer the beast! X

  • Do you think that the average doctor (not a specialist) thinks of an irregular heartbeat as a symptom of something rather than a condition all of its own?

    As far as the man-in-the-street (or woman) is concerned, if you did a survey, how many would have even heard of atrial fibrillation? Yet just about everyone has heard of stroke, diabetes, heart attacks and probably knows someone who has had those conditions.

  • G'day Buffafly,

    Wow! what a ramble ... a rant even ! Now you've started me off.

    Problem is with AF there is no money ploughed into research on causes of AF ( and I mean big money research like goes into cancer and like goes into developing drugs). If you can't come to grips with its causes you are not likely to come up with its cures and for that matter treatment options. If you don't understand it how are you gonna sensibly educate medical practioners. It'll never happen 'cos in the overall scheme of things there are more serious medical issues to be addressed and so its a case of AF competing for limited funds in order for the big money research to occur. In effect AF will for the foreseeable future be looked at along the FORD principle - Fix Or Repair Daily. Its cheaper that way. And don't forget no matter what politicians tell you (especially in an election year) this country is a financial cot case (but not in the same league as Greece - just a different type of financial cot case) - for gods sake, we are still spending more than we are earning, as a country we have a continual debt, every month our national borrowings do not decrease, often they increase - no matter how much the tax payer is screwed. As we are talking medical mostly - look at the NHS - what a bloody shambles. One way that the cost of the NHS could be reduced is to go back to basics - it was originally designed as a medical service. Nowadays its a health service (there is a difference) - so get rid of all vanity/cosmetic treatments that fall under the health service - if people want vanity/cosmetic stuff let them pay for it (unless of course this falls under the heading of vanity/cosmetic stuff resulting from, say, cancer, or part of humanitarian aid, accidental injuries, i.e. from accidents or burns etc.) I'm talking about .... oh I don't like my nose, I'll have it reshaped by plastic surgery - get my drift. Bring in the means test for prescriptions, low income = free prescription, middle and high income = people make a proportionately larger financial contribution toward their prescriptions. Similarly, on the same basis - pay for GP's visits and associated services.

    Trust me it will happen - eventually - trouble is it'll take a political party with incredible courage to do so - so breath easy -it ain't gonna happen this year :-). You can't tell me people can't afford it - they bloody well can - fer instance - if a family can afford to pay for a season ticket to a football game, if that family can afford to travel all over the country with other supporters to support their team, then they can afford to pay in excess of their NI contributions toward the cost of their prescriptions and Doctors visits, its all about changing spending priorities and attitudes ... problem is people have had it on easy street for so long now .... there is no such thing as a 'FREE' lunch - eventually everything has to be paid for and this 'Welfare State' mentality isn't the way to go.

    So that's my contribution Buffafly .. you have a good day now.

    May the force be with you all.

    Aussie John

  • Wow, Aussie John, talk about light the blue touchpaper and stand well back!

    As for the causes, mostly they seem to be a 'series of unfortunate events' so prevention would be live a moderately healthy lifestyle and cross your fingers!

    As for cosmetic treatments etc, I do feel a tiny bit resentful at the amount of money spent on self inflicted conditions and I think more could be done on that score. And I do think it should be a Health Service instead of just responding to demand, not counting demands from AFers of course!

  • Everyone has made such good points... I'm glad I am in a forum with people who have the same condition and the same thoughts and feelings about it and can express them better than me! I think yes, doctors tend to see AF as non-fatal, throw some tablets at it and don't do anything else unless you keel over. There's a mountain of misunderstanding to be climbed, that's for sure! Grit and determination, that's what this blooming condition teaches you.

    I have decided I refuse not to look on the bright side. I am going to go put on my pinafore, get the nuns to smuggle me out the back door and before you know it I'll be in Switzerland. Someone set up a nice bank account for me...

    Lis

  • Then come visit me in Genève, though I don't recommend the banks!

  • Buffafly, you've started something here, and Aussie John you've sorted the N.H.S. out.well done both of you. It's good to have a rant and I've enjoyed reading your posts.

  • With 14 replies, I guess it's all been said here, Buffafly. I can empathise totally with your thoughts. I do all I can to stay on top of my AF and all its problems and effects - and have become increasingly aware that if I don't stay ahead I can be filed away and told to keep taking the tablets. I'm not a nuisance to anybody; I don't think I know better than those looking after me - I just want to know that what is being done and what I am putting into my system is the best way forward. It's an attitude I find gives me an interest and a confidence that I am being proactive with my problems.

    I went for my usual INR blood test recently and the nurse asked me how I was. I said I was OK but feeling particularly tired and worn out that week. She replied "...but you're here, aren't you?" She is a very nice person but what she said inferred that there were many out there who were worse off than me. It knocked the stuffing out of me! It took me a while to get back my positivity. A small event but a huge one in my progress through AF. I'm sure most of us aren't looking for sympathy...but just an understanding.....and a hope that one day, we will understand so much more about this problem.

    David

  • This forum is where we turn when we find ourselves in all these awful moments where no one understands. I told a friend the other day, AFers are an incredibly strong lot of folks. I would not like to see friends, family, doctors - go through what we go through - but had they, they would be impressed by our courage. Most of the time we fibrillate in silence, once we adapt to the situation. We are very BRAVE! It is why we come here... we know the others know. As Kurt Vonnegut said a very long time ago - "Grok", to fully comprehend something/situation.

    We Grok - and thank goodness. All my best to you all, and profound thanks.

    Annie

You may also like...