There are about 2800 people on this site how many are still active and posting is there anyway of knowing. it just seems to be the same people on here and I am very grateful to each and everyone. Maybe the others have found the answers wish they would share.
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souljacs4
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Funny you should say that right now as I was thinking on the same lines but on another site.
I belong to a hedgehog forum and have a recent post of mine on there (btw I look after hedgehogs, poorly ones for mending and small ones to fatten up over winter).
My post has ~ 10 comments from just 3 people(including me) and overall that forum has been very quiet for a while now.
However, just that one post of mine has had over 1800 viewings!!
People lurk in the background and read the posts but don't often or probably, more commonly, never post themselves.
Pat
in reply to fallingtopieces
Well done fallingtopieces. We applied to take some hedgehogs to look after then release but the trust wouldn't let us have any because we have badgers. We've built great piles of branches and twigs in our woods and did see one a couple of years ago, but seem to have disappeared again now. Used to have loads of them but no more alas 
.
Koll
fallingtopieces in reply to
That's a shame Koll.
Where there are Badgers there are no Hedgehogs, or not for long anyway. They are the only animal, bar a few clever foxes, who can get past the hoggy spikes.
Badger numbers increase as hedgehog numbers decline. Other things contribute to their decline too, such as fences with base boards all the way to the ground, gardens paved over, slug pellets etc.
To anyone who has hedgehogs around, please feed them. Dry cat food, dog food, mealworms. Plus a bowl of water.
In case anyone is thinking it will attract rats, I have fed hedgehogs in my garden for years which is how I started looking after them in the first place and only ever had one rat visit over 3 nights.
As soon as my humane rat trap arrived he stopped visiting!
I know what happens for sure as I have 4 CCTV cameras on them all night!
Pat
Hi Pat,we were so pleased when our hedgehogs returned towards the end of last week. We have had them coming for the past 3/4 years. we like to think they are the same ones every year but are probably not. Whatever we love them and feel very fortunate to get such a close view of these lovely but increasingly threatened animals. We put meal worms and water on the patio. we do get a good view
It's lovely to read your post and know they are being helped
Sorry souljacs to digress I read a lot on this site and have gained a great insight into many aspects of A.F, I ask questions, have received help and reassurance and post if I think anything I have to offer might be helpful. Best wishes Kath
I love hedgehogs what a lovely thing to do looking after them until they are well again. I know what you mean I belong to other AF forums same there. it would be good if people just posted a few lines as an update on how they are doing. also I notice Saturday nights are quiet must be people are out having a few drinks I wish 
This is true, many more people read than post. Those too get answers, and indeed comfort from this. I guess they will post eventually if they feel they can help or add something useful of their own.
BobDVolunteer
I think that the people who have had their ablations and got better tend in most cases to stay away although there are a few who drop in from time to time. The hardcore stay because we like to try and help,others but some of them disappear for days at a time. All have lives to live so it isn't anything bad of course. I am still in touch with people I met five years ago but few if any come back here. There is also a large following who read but don't post. Sorry but I don't quite understand your point unless you are sick of ME. lol
Bob
Dear Bob,
Keep posting your quality advice, I am learning all the time.
Kind Regards
Barry
Sick of you Bob never I think your reply was spot on. As you say it's the hard core of people like your good self who stay and help. I have had so much help and information from the forum, it just made me think how much more information is out there that could help others. but as you say "lives to live" I can understand that.
No one could be sick of reading your comments. plus you are so informative. I always skim down the replies and if your purple one is there I read it first as you are so sensible. Don't ever stop.
Hi Bob
Interesting that you say "....people who have had their ablations and get better...."
My understanding is that ablations are just a temporary remedy and that once AF strikes it's will become a permanent affliction sometime during ones life regardless of the number of ablations or cardio versions.
Maybe there are some fortunate sufferers out there.
Best wishes
I think you are wrong in you're believe. My EP said if it works (yes it may take two or even three goes in some cases as they tend to be very cautious) it can and should be in most cases a permanent fix. There are lots of variables and some ablutions are much easier than others. I'm a year on since mine (I was presenting with Lone AF sometimes, SVT and also flutter). When I was treated my EP carried a RF Ablation treating my SVT (he was positive that was dominant and causing my AF) and my flutter while he was at it. That was a year ago and although I have had three or four episodes since they have been really minor compared to the symptoms I had before.
Hi Gonzo
Well, hopefully for everyone AF can be cured. In my case I'm told it can't. That's after 2 ablations and a cardioversion. Perhaps my age is against me. I'm told that any more ablations would not be worth the risk.
I'm not complaining as I manage very well with permanent AF. Just keep taking the meds and told to exercise a lot, which I do.
Stay well.
people seem to come and go and often just return when something goes wrong- it's good that we have people like bob and Ian who are always quick to answer anyone in difficulties.!!
I've been AF free for nearly a year now after my ablation. I only take my anticoagulant and because of this site, I'm more and more convinced that I'll keep on it long-term even though I'm 58 and otherwise in good health. What I'm trying to say is that nothing much changes for me, thankfully on a day to day basis, so I don't really have anything new with which to start a new thread. However, I get the new and popular threads alerts to my email on a daily basis which I read, and if I can offer an opinion or advice, then I will.
Three years thats great news! long may it continue.
Sorry, I'm a 'lurker' in the background. I do look at the site every day when in England but rarely post. So many of you have such wise comments to make,my thoughts have either been mentioned or seem irrelevant. I will try harder though!
I am one of the followers and read the forum every day, so to the regulars please keep helping I am very grateful. As for myself, diagnosed in Dec 14 and at the present am managing on just Apixaban with Bisoprolol in my pocket if I have another episode of AF which thankfully I haven't, to my knowledge. I feel I wouldn't be much help to anyone as I haven't enough knowledge and still trying to cope mentally myself with the help of this Forum, thank you to all who keep regular contact.
I know what you mean about coping, my daughter was pregnant when I found out that I had AF and I had convinced myself I would not see my first grandchild. The mind can play a big part in AF, it scared the hell out me, but I didn't want to show anyone how worried I felt. But he's here now, he's beautiful, and I am much more positives thanks to everyone on this forum.
I've been lurking a bit because I've been busy... And the AF is doing nothing special, haha. But I am reading posts. I am trying to restrain myself and only contribute where I feel I have something to say, because as a writer and softie I'm way too inclined just to do daft things like send hugs when for all I know the people I'm sending them to may be allergic to them!
I very much appreciate the Forum, I have to add. I think some people don't ever write posts or reply because they haven't got the confidence, and others just aren't sure their two pennyworth will make a difference. I would say go for it myself...
Lis
souljacs4 in reply to
I love reading your posts Lis and getting the cyber hugs you send I know what you mean about confidence. I have Dyslexia and it can take me hours to get posts done unless my hubby is home and can check them for me. its funny some times but also very frustrating. because what comes out of my head doesn't always make sense in print. and that is another thing this forum has helped me with I post things now and that's something I would never have done in the past.so please keep posting you advice and your hugs
If I had not been made redundant last autumn I would not have had the time to have posted anyway near as much.
I was directed to the AFA site by my consultant last September and joined up. However I only found this blog at the end of January. It was then a few weeks before I posted. I have found it so useful and informative as well as supportive especially as I do not know anyone suffering from AF (I had never even heard of it before!!!).
Re some people's comments above - I think that a key thing is the SHARING of experiences not necessarily offering opinions that is so important so that we are better informed and also realise that there are others with some of the same symptoms. This is particularly key because, as is said so often on here, AF is a mongrel affliction and affects people so differently.
I don't often post, but I read everyday. this site has been and is a lifeline.
Thanks to bob for his continuous support and other's I do look and respond but I am not as know led able as others so can only talk about my experience s
c
An interesting question Souliacs4.....like most folk here, I have been so grateful for the knowledge and experiences shared by others and that has helped me enormously. I also think it is important to remember that we are told there are over 800,000 people diagnosed with AF and possibly half as many again who have it, but do not know!
We know AF is different for everyone, with so many variations and degrees of symptoms etc., but maybe this means that the vast majority of sufferers do not feel the need to join a group like ours and many who have had various treatments and/or procedures have just moved on and this is probably encouraging to remember.
One of the most key things I have gleaned from the Forum is the importance of anti-coagulation, and the work the Forum and the AFA does to increase awareness is vital.
So one thing is for sure, we will never tire from hearing from Bob, Ian, Rosy and everyone else who contributes to the Forum......ps. I wonder if hedgehogs suffer from AF!!!
souljacs4 in reply to
Wow that's a lot of people with AF.
in reply to
I doubt if hedgehogs get AF. EP said it was a size thing. No mice have AF, but all big whales have it. I know horses get it as well.
Koll
As someone who reads but doesn't necessarily reply to posts it's because sometimes I don't feel 'experienced' enough and by that I mean I'm not on anti coagulants, the only meds I take is bisoprolol 2.5mg as and when needed and I've not had an ablation or cardioversion so don't feel like I can add anything to the mix.
What a wonderful thread, I cannot add anything extra to what has already been posted. I would just like to say that there was no internet connection when I was in hospital for 15 days in March and I was bereft because I could not read any of your posts. I, like others, do look every day as I get emails, so please keep up the good work of advice to us all, without it I would not have a calm heart today, just 3 fractured lumbar vertebrae and have another five weeks of rest and gentle walking 😿.
Hope everyone has a calm week and Angel blessings to you all.
Di
I don't think I will ever completely drift away as you are all my partners in this. I count you as my critical friends and having met some of you I feel that we have more than A.F. in common. I still need help and advice and hope I can also give some help along the way. Often I have found that I don't just need factual support it also helps to know that I'm not alone with my symptoms and problems. I'm not sure that I would have had the courage to choose ablation without encouragement from folk on here.x
I only post when I need advice which hasn't been covered previously BUT I read the messages every day so I am still here and very grateful to those who keep us up to date. It is good to know that I am not alone with my AF.
I've noticed that many "first time posters" tend to get shot down in flames, for phrasing their question in a marginally incorrect fashion.
Maybe that's why there are so many lurkers.
Mike.
I agree that answers can sometimes be a bit tart but generally I feel the tone is very supportive and newcomers are warmly welcomed.
The odd sharp difference of opinion can be very readable! It's a pity when someone has a fit of pique and leaves and very sad if someone feels picked on and fades off the scene.
I suspect that some sleepers may be doctors / nurses gaining knowledge.
Think you are right about nurses and doctors. I have told all of the medics I have seen about this site. there is so much more on here for them to read. than we could ever have time to tell them about in a consultation.
I only came on here at the end of January.
I certainly did not take the comments and suggestions as me being shot down in flames. Rather that people (very kindly) offer their knowledge and advice and also giving new people the correct terminology so that they are much more informed when talking to the medics and when searching on the internet so that they get to the right place rather than being up a dead end road.
I am not sure what you mean by 'shot down in flames'. And I would be very sorry if anyone was put off by one person's reply as there is so much variety and difference amongst this forum.
My experience is that although people don't always agree with me or I with them, the stimulation from the discussion on is always illuminating and I believe that people ar very well intentioned and post with good intent, wanting to help and support.
There will always be people who only want to ask one question and go away or the odd person who will take offence at something, I remeber one such who had also taken offense on at least 3 other forums.
I also believe there is quite a lot of reluctance to 'put yourself out there' generally as it is the internet.
I also wondered if you had felt 'shot down' by a reply?
Very best wishes CD
The first thing I do each morning is read the posts but do not comment unless I.need help or have a positive response to a post. I really appreciate all those who regularly help. Guess this forum means different things to each individual.
I am very appreciative of the replies I have received. I've only posted about 3 or 4 times, when I am in a really horrid zone. When I feel ok, I tend to keep away! I guess this is me trying not to dwell on stuff, when it diminishes temporarily. Thanks to the 'regulars' for their support
Hi - I may not post very often but appreciate reading other peoples experiences and find it very helpful. Ann
Lovely interesting thread. I read the forum each day for help, advice and information and I agree with PeterWh that the terminology and its correct use is a great help in communicating with physicians. I post when I need advice or when I feel I have something to add - otherwise I lurk.
I don't think I'll ever give up visiting with you nice people as I live in a part of the country which has no arrhythmia support nurses, groups or clinics, one overworked EP and a creaking NHS. Whether one posts or lurks, the support is here.
Regarding sharp answers to some threads - sometimes the written word is not quite on the same wavelength as the spoken one, which can be moderated by inflexion but the message is often more important than its tone.
I have been so grateful for the help and advice given on this site, I dont
read every day and only post if I think my advice or thoughts are relevent.
Thanks to everyone.
It would seem Souljacs4 that you have lit a bit of a fire. I think we can understand just how important this site is to all of us, it certainly is in my case. When I was first diagnosed with AF I could-n`t even spell AF. I have gained so much knowledge and support from people on this site that I can`t express how helpful this forum has been.
Where I live in Northern Ontario there isn`t any specialist of any kind. (regular GP & nurses) So to come on this forum and gain this kind of knowledge from you good people it is a godsend.
I have to plead guilty I am one who rarely posts on here, but I read daily. I mostly feel that I am not qualified to comment on certain topics or share experiences for that matter as the experience has already been posted by someone else.
So keep up the good work and keep your stick on the ice.
That's why this forum is so good because we can all help each other and distance is not a problem thank goodness for the internet.
Everyone is 'qualified' as far as I am concerned and it is so interesting to hear of people like yourself who live in places which may not have the availability of specialists nearby, we in the UK live in such a small country we moan if we have to travel more than a few hours to see someone!
Now you have started, keep posting, I for one would love to hear more about your experiences,
There are many people that are just readers and not posters and then there are some that do not post because of not being PC or being hit by trolls. Does not seem to have a Troll problem on here thankfully.
It's really good to be hearing from those who don't often post and great to have a world wide forum. In the middle of the night in the UK I really value the contributions from those in other time zones.
It has been such a comfort to me and has helped with many a restless night when things are going around in my head and I am looking for answers. I now think I will post it on the forum tomorrow. what a blessing that is to know people are there to help if they can.
I do have a quick look most days, but as things are on an even keel at present, I rarely have much to say. I think this site is a fab resource if /when things get weird or scary. Also tips on negotiating our wonderful NHS are a great help for folk.
You volunteers do a wonderful job providing info without scaring new arrivals s***less.
Thank goodness for the internet because when I first got AF there was no such thing and as I have said previously you were on your own.
Also a big thanks to the regular contributors who take their time to offer this "service" to us all who have or have had AF. I may not agree with all the comments but they really do help us to understand and manage this condition we have all had thrust upon us giving us better understanding of the options etc that the medical profession probaly do not have the resources and time to discuss with us in detail.
Please keep up the good work and thanks
Hope it does'nt matter that we don't post.... I am mostly looking to all you lovely people for help & answers, which I usually get. thanks all.
I think things are just about right. As I write there have been 56 responses to Souljacs question - so thanks to those who respond and to those who don't!
Hi
Just knowing this forum is available whether I want to 'post' or 'lurk' is priceless. There is so much information and experience between us all, and the fact that anything relevant to AF can be discussed, debated, rejected etc is very healthy. Af is not so scary now. I do tune in most days but like others don't post if I have nothing of interest to say. The regulars should be congratulated for keeping us informed, amused; sometimes I laugh out loud at the dry and witty remarks - long may they continue. And I even enjoy the odd skirmish and sabre rattling, usually between the boys. We're all in it together and the genunine love and respect is obvious.
So Thank You all the regular contributors - please be assured that your daily posts and responses are eagerly received and greatly appreciated by all us 'lurkers'. You have become dear friends in this anonymous webworld. X Marilyn.
What a lovely heart felt post I am sure others will agree. felt a bit emotional reading it because its all true thank you.
Souljacs,
G'day,
When I was diagnosed in Jan 2010 I'd never heard of AF - having led a reasonably fit lifestyle. I found the AFA website (in the old format on Yahoo - long since defunct) and came across BobD in those far off days. Bob offered me a great deal of advice - in those days it wasn't so much what I had that bothered me but what lay ahead on the path I was to travel. Bob and indeed many others gave me much support, and one or two pointed me toward vagal nerve.
I am not as active on here as I would like but when I have the opportunity try and make a contribution - all this centres around my work commitments - so I guess from Jan 2010 to April 2015, making contributions as and when I can gives an indication of my appreciation of the AFA and work that is done by many in its name.
It is an area for learning and in a sense the more I learn, the more I understand and potentially, the fitter I become. But, this bloody condition is pure and totally pure mongrel and is a hydra headed monster - all things to all sufferers - but somewhere there is a common denominator for all of us.
John
Just to add my endorsement and thanks to all who actively contribute on this site.
I was diagnosed with Paroxysmal AF in January this year, like many others who have posted I had never heard of AF prior to this diagnosis.
Since discovering the site a few weeks ago, I have benefited enormously from the shared experience that can be found here. I have posted one question regarding meds vs ablation and received excellent replies. The threads on lying-on-back vs lying-on-side have helped me reassure my wife I am not going mad
I have been particularly interested in the posts re the LEGACY study in Adelaide (I live in Sydney) and in fact have just now called Dr Sanders’ practice at the University of Adelaide with a view to arranging an appointment. If I am successful in beginning treatment under the novel approach promoted by Dr Sanders, I will certainly begin a thread on this site. Regardless, I will be an avid reader and all who contribute will have my wholehearted thanks.
Ric
It would be great if you could take part in this study. please let us now how you are doing I am very interested in this study .
Hi Souljacs - I had my first consultation with Professor Sanders this week and I have posted a summary in the thread titled "AF Legacy Study (interview)". I hope you find it of some value. All the best, Ric
I started looking at the site in Feb. this year, for my husband's benefit who is the patient, as he has an allergy to computers! Neither of us had ever heard of AF! So got lots of help. Thanks.
Point I'd like to make, gleaned from a Patientsuk site which I used to use for myself and with another totally different problem, is that the most active users are the people who are going through it and really suffering. People come with their problems and panics. So it can give a distorted view and make AF sound worse than it is. Which is why it's a good thing if people can just give updates now and then to see how they are coping. Paricularly when things seem to be going well. And brilliant of Bob to keep in touch so helpfully when his AF seems to have been treated successfully.
Some people would have just wanted to forget it all and get on with life, perhaps not surprisingly.
It's a great forum though.
Still here.
Dear everyone, PLEASE keep posting! I learn something every time as our shared knowledge pool grows and get cheered up and hacked off in equal measure on behalf of us all. I've posted a very few times for which I apologise but for me it's been one step forwards, two back in my 6 year quest for a solution, ie an ablation and whenever I've had something to report, eg the brilliant new hybrid ablation I was admitted to hospital for last April (and May, and June and September) I've been too disheartened to report yet another cancellation....
When all this is over, which I think is when the local consultants finally agree they are simply going to leave me on my various meds and their side effects, alone with my stubbornly un normalising ratios,exhaustion, tinnitus and all the other things that make life on AF such a joy, then I plan to write a blow by blow account for the edification of our GPs, specially the youngster who said "why do you want an ablation when you can just live with AF?". I wouldn't dream of posting the whole thing but promise a very satisfying rant on a few salient points!
I think it is important to share our experiences of AF to help others, particularly those who are new to this forum. I have learnt a great deal but mostly that everyone is affected in different ways.
Please keep posting it helps so much
I think it's a great forum, I don't often post questions or reply but some of the advise given to others is often very comforting. I guess I look at the site about three times a week.
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