Quiet out there today. Must be the wind keeping everybody quiet.
I have been thinking about this for a while so thought I would float it and see what happens.
I have been involved with AF Association since the original Yahoo forum we all loved until they changed it. A lot of members fell by the wayside when we switched to HUL even though we ran both for a short while. Not sure why that was but it happened.
Through all that, membership which at the time was less than 1000 was predominately people with AF and by that I mean lone AF, simple AF and for the most part paroxysmal AF .with few if any co morbidities so we all had very common ideas about how our condition affected us. Anticoagulation was still sadly in the background and there were no NOACs. in fact aspirin was still commonly prescribed by many cardiologists.
Fast forward 8 years and how things have changed. Yes great strides have been made in treatment, even cryo ablation was very rare back then let alone laser balloon , hybrid ablations etc.
What seems to me to have changed within the membership is the complexity of some of the members problems. Lone AF often seems a pipe dream with members having complex issues many with names I haven't heard of before. Valvular AF has been reported on more than one occasion THIS YEAR along with people who despite many trips to hospital have yet to gain satisfactory diagnosis of what is actually wrong with them. There are people who have developed AF since they had heart surgery or stents fitted which sadly is not uncommon.
Almost daily now we read of more complex cases where people come to us, the AF Association forum, for help and support even though what they have is scarcely what we know as AF.
Over the ten years or more that I have been involved I have gained quite a bit of knowledge from reading members stories, working with experts on various committees and of course the annual Heart Rhythm Congress in Birmingham (England that is ) every October but recently I have found myself sadly unable to answer some of the questions. I often refer people to AF Association website for reading matter but even some of that is not able to support the complexity of issues presenting.
OK I can't really think what can be done and in the absence of a magic wand (Expelliamus!) probably not much in the short term but we do all care and we should all be here to support each other even when we don't know the answers.
Now that is quite enough deep thought (42) for one evening so with the wind now howling again I'm off to pour a drink.
Written by
BobD
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I first had a 'virtual meet' with you when I was diagnosed back in Jan 2010. I had never heard of this mongrel thingo called AF and your advice certainly helped me quickly come to grips with it. Mark S, made his contribution too to my learning which is how I linked vagal nerve with AF and when I noticed how certain foods affected it. In those days it was the Yahoo forum which I remember well. We had our real life meet much later when I retired and moved to Cornwall and we all gathered at the pub at Budleigh Salterton (I think).
I think in those now far off days when I first found Yahoo, (from memory) Yahoo appealed to a fairly narrow audience. HUL appeals to a much wider and possibly international audience and with that comes this diverse range of AF's that you refer to.
I think that what you say is about all you can do - answer those questions you can answer and give support to those that you can't. In that regard I also think encouraging people to think outside the box about this condition may also be helpful, especially taking advantage of the fact that international AF'ers may have exposure to websites that could be useful to us here in Britain ... in terms of AF - its a global village and we all inhabit it. I would love to see comments from sufferers in non English speaking countries (so long as they can write in English because I only speak/read English and Australian).
That's it for today, must get my beauty sleep as I have to go on a work training course tomorrow and I don't want to fall off my chair asleep. I bet your drink you poured wasn't a glass of milk !!! Lol ...
Nice post BobD. FWIW, you and this forum have provided me with a lot of good information and support. I thank you for that. I too have trawled and have some rely good informative information in which I can make, hopefully, valued judgement on my way forward. I think the issue is becoming clearer in that the condition, as more is known, is becoming a more complex beast than was once thought. A good number of years ago most would have popped off, but as lives are elongated, then conditions such as AF are coming to the fore, and as such, the medical fraternity are only really coming to terms with it. Live Long and Prosper, as Spock would say.
Hi Bob, to me the value of the forum is not so much the technical knowledge shared (thanks to various search engines there is more than enough of that to be found elsewhere) but the port of call in a storm for newbies and those in crisis, the reassurance that your strange symptom is common to some others, the exchange of experience about procedures, doctors, hospitals, treatments, somewhere we can talk freely about our health problems without frightening, boring or embarrassing our friends and family. So many people do have a surprising fund of knowledge or know a man who does! that it is often worth asking questions here first before trawling through websites for an answer.
I wish this resource had been available to me 9 years ago when I was basically told to go away and take the pills and you'll be fine!
This forum has been extremely useful to me in helping me come to term with the fact that I have this condition and have to find my way of living with it. Initially I truly felt so scared and alone with my fear but just being able to read about the experiences of others has really helped me to know that what i am feeling is "normal." I am so glad this forum exists.
AS always interesting and pertinent thoughts, but perhaps you are expecting too much of yourself?
The forum for me has always been the emotional support network, the place to share fears worries and downright scared feelings with others who understand. You've supported me through all of that Bob, and you know how grateful I am.
Medical knowledge advice and even support should come from the professionals, Yes we understand the sharp end of taking warfarin for the first time, yes we know what it's like to have a CV or ablation (not me) but more complex and certainly inter-related medical issues are for the doctors not us.
But does that take anything away from what we do? Not in my opinion, we offer what we offer, which is a listening ear, a kind word, an internet hug of support to the lonely, the less informed and the scared.
I've always valued that more than the 30 mins or so I get with my EP.
You have and will offer that in spades Bob and long may you continue to do so
Hi Ian, I wasn't feeling downhearted mate, just wondering what had happened and why it now seems that AF had become a catch all for a whole range of arrhythmias. I had a conversation a few months back with a local consultant when I had a DCCV and he referred to my AF. I pointed out that I didn't have AF as was clearly seen on the ECG with plentiful p waves and his response was (oh we call it that as it is a general term." Pratt!
Obviously the more you learn the less you know you know and it was really a general observation that the world of AF is expanding.
Sadly some of my better contacts have moved on and I do struggle to get information on occasions so if I don't comment on a subject it is most likely that " I know nothing".
Just knowing you read our posts, helps, as you are our go to person.
We don't expect you to know it all, as you often say 'not medically trained'.
I believe there are medics who read our posts and I also believe that they may be AF sufferers themselves, possibly they could help out where your knowledge stops.
Any how this is really a BIG THANK YOU for being at the end of this line.
Bob, You are one of the voices that keeps me reading and following this forum. Your ability to stamp (albeit gently) on scaring suggestions and you feet on the ground approach brings in the sanity that this and every other medical forum needs. Keep up the good work!
Incidently are we having a west country meet soon? I sometimes feel I do not receive all the posts.
The wisdom and support is of this group s invaluable. Thanks to everyone who gives their time.
As knowledge generally of the body and he it interacts increases it is inevitable that areas of medicine and how symptoms are labelled become more complex before becoming clearer or different. I suspect that in a further ten years time there will be even less firm labelling of a cluster of symptoms
I'd say carry on as is, it's terrific. Like others have said, I have learned more on here than anywhere else and it has changed my life for the better. You can't do everything and I find it hard to see how this forum could be much improved in quality of advice.
Morning Bob, good post.... This forum has been invaluable to me and your knowledge and support is always greatly received by me along with everyone else's replies.. without the emotional support, which to me is as important than a diagnosis I would of continued having very dark days and strugged to understand the journey af has taken me on ...Yep I guess over time advances in medical technology have changed so much and as humans we probably share and interact more openly than we once did which may throw up complexities... But what's key here is that knowledge is power and with that knowledge we can go forth and make better informed choices, indeed step outside the box giving us time to chew things over thus giving us feelings of control rather being controlled by it and there's no better way to do other than shared experiences... For me Hul has taken some of the power away that af had me gripped in, we all have an understanding to some degree what others are going through whether that's symptoms, proceedures, medications, different types of af under that now big umbrella, some have different opinions (some very interesting reponces and posts!) than others but equally that should be respected as we are not all looking out of the same window! But where else can I write what I do at the Times that I do and be given such a wealth of support where my thoughts feelings (rational and un rational) are validated? Keep doing what your doing, it works and very much appreciated! ... 😊
Oh yes, others have said it, do keep on... It's the support as much as the knowledge that matters, and I've seen some incredibly complex cases written about here with names I can't even begin to pronounce. I don't think anyone who wasn't a specialist could ever hope to provide medical insight...
When I joined, the forum was already Healthunlocked, so I didn't get the chance to meet everyone from the old one. I am guessing that as happens with everything, the numbers were probably misleading because there are people who have ablations or who get their heads round coping with AF and drift away.
Which doesn't mean it's any less valuable. I have had more feedback and reassurance from here than I've ever had from my doctor, and I know I'm not alone in seeing it as a really important part of managing this condition.
I found the forum by chance, got little knowledge from the hospital and was left very scared, the knowledge on here far outweighs some of the medical staff I have met on this journey. I find the different groups I'm a member of invaluable for information as well and for all the people who reply I'm grateful for their input and experience. Its a shame all levels of medical staff are not educated as to what AF is and how it impacts. I met a woman who worked as a health care on my local coronary care ward who had no clue as to what AF was or how it affected people. I still wonder was it because she had never been on the ward when an AF patient had been there or she wasn't clued up on individual cases and what their health needs were and the impact on them.
I have just watched a U Tube clip with (Dr Mark Earley) from a post on here headed (puzzled by chads) Where he says PAF is now easily treated in a one to two hour procedure which can be done at Whipps Cross hospital where a unit has been set up and they are now doing up to five procedures a day some as day cases. Good news. I hope this will means that in future they will be able to help people with more complex cases of AF as they find out more about this condition. it is information like this and the lovely people on here that make this site invaluable. I really would have been at a loss without it.
Just to echo many comments above, invaluable, informative, comforting, absorbing, reassuring, emotional. I have learnt so much from this site. I didn't know the previous Yahoo but long may this continue. How did I find this site? Having previously experienced prostrate cancer I was directed to a support site with the PC charity and the forum there was a wealth of info and experiences like on here. So when diagnosed with AF I wanted to discover if there was a similar forum fo AF. So here I am, thank goodness.
Bob, yes thank you, I am 4.5 years on since RP, I had a open procedure. On 12 monthly tests and like you PSA is 'unreadable' at less than 0.008. Good that you also. Well done!
I'm nearly five years but mine was complicated as it had found a way out locally. Still don't understand why I didn't loose weight after all they took out but the radiotherapy helped and offset the gains from the hormone implants. Keep smiling. It is all we can do now. lol
I cant really add anything as my thoughts havle all been expressed by others but i would just like to say that this forum and in particular Bob and Ian , saved me from going up in a puff of smoke ! You have given me such good emotional and factual support but also kept me grounded with some no nonsense straight talking. If you had been my husband i wouldnt have listened but because i knew you both knew the score, i did. Thanks also to the whole bunch f you A.F.ers for your help over the last 3 years. X
Just knowing there are people who one can moan to and who understand the desperation one feels sometimes is literally a life and mind saver. Thank you all for being here. Terry
I remember when i first found this site af terrified me i felt alone and just wanted to speak with people who also had af i really thought i was going to die the i read things on this page and my confidence grew and I wish to thank all of you but especially bob karen
There's always someone who has already experienced what you are going through. Everyone knows how you feel. Keep doing what you have been doing and heartfelt thanks for all all the support.
Thanks to this site I am starting to understand more about my condition, and managing to panic less! As said above information has been hard to find from the medical services.
I live in Poland, and was diagnosed in hospital here after having a TIA. Apart from one cardiologist whom I met when I was sent for an echocardiogram, I understood nothing the doctors said, and came home with a list of six different medications! I'm now down to three, but read all your posts avidly. It is soooo helpful to hear everyone's experiences and advice - all in English!!!! Thank you all so much.
This forum has been amazing and the support I received from other members has been great. I don't use it quite so frequently now but still an invaluable place to go to for reassurance and chance to share experiences with others so I don't feel so isolated. Thanks to Bob and Ian for being there to provide sound advice.
Hi BobD, Need a hug? Thinking of you with howling winds and winter in the UK while here down under I'm sitting (late in the afternoon) with my Bob at the beach taking in the views.I"m not one for forums or chat rooms but joined this one about a year or so ago, maybe longer and it's been fantastic. Volunteers and members alike have taught me a lot with their insights,ideas, experiences and lending a sympathetic ear. Realising I wasn't alone by any stretch with this AF business helped me no end. Thanks again BobD for your input and posts - may you keep up the good work for a long time to come.
Cheers from down under ( I'll send you some sunshine:))
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