Hello, I’m a new member 💚

[Fibfab]

Hello there, I hope to learn about some of the issues experienced by those with an AF diagnosis, so that I can give support to others. I hope you’re happy for me to join the forum 😊💚

[BobD Volunteer]

Welcome. Read all you can!

[jennydog]

You are very welcome. I have gained friendship, knowledge and tremendous help from this site. Knowledge is power and we must all learn to take responsibility for our own health.

Whenever I have an AF episode I remember what Bob said. "AF won't kill you." That makes me smile and it's definitely calming!

[Fibfab in reply to jennydog]

Thanks 😀

[pottypete1]

You are very welcome.

There are some very supportive member here so feel free to ask. We are not medically trained but will, where appropriate answer from our own experience.

Interesting fact that when I joined about 3 years ago there were circa 14000 members, I noticed the other day that the membership had passed 16000.

Pete

[doodle68]

Hello Fibfab welcome.

There is a wealth of knowledge on here provided by experienced people that I have found both invaluable and reassuring.

There is always room for one more to contribute

[Fibfab in reply to doodle68]

Thanks 😀

[Hidden]

Hello and welcome Fibfab. Lot’s of folks here will be very happy to share their AF knowledge and experiences and you will find masses of information on the AF Association webpages to help you come to terms with the condition. Most newbies are anxious as to how AF will impact on their lives and in most cases, folk settle to a treatment plan and go on to lead relatively normal lives. Suggest that you familiarise yourself with information relating to anticoagulation. Also, if appropriate, look at making lifestyle changes as they can have a major impact on how to reduce the impact AF. Pete makes a valid point about the number of members but there are well over 1 million people in the U.K. diagnosed with AF so the hope is that they are coping quite well and don’t require support. Best wishes, John

[Fibfab in reply to Hidden]

Thanks you, FlapJack. I would like to understand AF from a patient’s perspective so that I can help those I meet who have the diagnosis.

[Buffafly]

Hi Fibfab, I wondered if you mean you are a carer of some kind? Many of us have found that both friends and professionals don't understand the impact of AF and I often think it would be a good lesson to professionals to read some of our posts. I realise they don't have time for counseling but the hearty 'common complaint, don't worry' attitude doesn't seem appropriate to many people!

[Fibfab in reply to Buffafly]

I’m a Cardiac Physiologist and work with and meet AF patients everyday. My observation is that many don’t understand what AF is and that we professionals don’t always have the time to explain. However, I also run a support group so would like to change this. I am hoping that reading these posts will allow me to understand how to help group members and other AF patients further.

[doodle68 in reply to Fibfab]

That's interesting Fibfab I have never been given any information on P-AF from the 'professionals' I have met , I have found all my information talking to people on this site and reading studies and information on the internet.

If I had waited for information from a professional I would possibly have died of anxiety by now.

I don't know if you are based in the UK but help and treatment for AF seem to vary hugely across the country.

I was diagnosed by letter in fact it was just a copy of a letter sent to my GP to confirm the results of an ECG I manage to obtain by getting my breathless self to the cottage hospital during an episode. I was instructed to see my GP about starting medication. The GP I saw (a trainee) asked me if I knew was AF was and when I said I didn't know a lot about it she told me to go and look it up on a computer along with CHADVAS and HASBLED.

Thank heavens for the internet and other people with AF.

My Top Tips on P-AF for your patients...

...look at your lifestyle and try to improve it that is with diet/excercise/reducing stress/losing weight and learn methods of relaxation to employ during episodes to reduce anxiety,

...Look up the videos on AF by Dr Sanjay Gupta the York Cardiologist on Youtube,

...Join this site for support .

[Fibfab in reply to doodle68]

Thanks for the welcome and really appreciate your comments.

[Hidden in reply to Fibfab]

I love that you run a support group. I live in a rural area and there are none here. I think most people with a fib need a forum( like this) to talk and share. A fib to " non a fib" people seems to be insignificant. If you have a heart attack, you get more empathy, lol. I was on a face book a fib page but quickly got off as it was alot of whining but little positive and it depressed me and added to my anxiety. Here, it is different. People seem to be genuinely interested in helping each other, there is humor, occaisional funny sex stories...🤣. Anyway, this is a great group and Ive found the comraderie extremely benneficial.

[Hidden]

Interesting point Buff!!....

[djbgatekeeper]

Welcome aboard 😊

[Fibfab in reply to djbgatekeeper]

Thank you 😃

[heartbeat4]

Hi Fibfab do you have AF

[Fibfab in reply to heartbeat4]

I don’t have AF myself but work with AF patients and also run a support group in my local area.

[heartbeat4 in reply to Fibfab]

That's brilliant, you have come to the right place the people on here are lovely and will help all they can.I really don't know what I would have done without their support.

[Paulbounce]

Hi Fibfab.

I`m also new here and in a-fib. It seems like a great forum - there is a lot of info about most things using keywords in the search box top right.

I`m assuming from your posts that you are a care professional and don`t have a-fib yourself. Rather you are trying to understand the condition more to help others.

For me, my a-fib isn`t really that bad. When I`m in it - I`m in it. When it comes back I stay in it until they `spark` me. I think your body gets used to it over time. A racing heart and being breathless seems to be the worse bit. Tiredness too but that could be down to the med`s.

My take is this -

1. it`s not going to kill me.

2. There are health problems much worse.

I try and take a positive view and WON`T let it get me down.

Best,

Paul

[Fibfab in reply to Paulbounce]

Thank you, Paul.

I don’t want to intrude but I feel it’s important to know how things are from the patient perspective.

Really appreciate your comments.

[Hidden]

Welcome I joined in Sept 2018 it's good to read and share the same thing it's like we have made good friend they understand how you feel

[Hidden]

Hello and welcome can I ask what area are you from? ☺️

[Fibfab in reply to Hidden]

Hello there. I’m working in the SW ☺️

[lizardo]

Welcome to the Crazy Heart Club. Joining this forum has been the best thing I have ever done. Reading all the posts gives you so much more confidence knowing how many people are going through the same thing.

[Hidden in reply to lizardo]

amen to that!

[reinaway]

Like an earlier post when I was diagnosed with pAF 6 years ago the best help and knowledge about it has come from this site. The professionals I have encountered have done their work medically wise but have no idea of the anxiety and stress AF causes in your mind. I hope you will find our site usefull and perhaps will be able to put your side of this condition to help us in time.

[Quilafizz]

I think it's wonderful what you are doing! The anxiety associated with this awful disorder can be completely disabeling. Everyone is different, but for me having an action plan was key. Listening to the other members on this forum reassuring me that I wasn't going to die and telling me how many episodes they had that were so much worse than mine was life saving.

I would say be very patient with these patients. This is a life altering diagnosis and they will need a lot of reassurance and kindness.

Every patient is different. There is no one treatment fits all. I think the most important thing is to make sure they know when they are in trouble vs. anxious and exactly what their 'escape plan' is.

For myself, when I travel, I always make sure that I know where the nearest major hospital is.

[john-boy-92]

Hi; you will find from this forum that people with AF respond differently to AF. Some people have unpleasant symptoms and go to A&E, whilst others like me can register 200 bpm without symptoms. I know that figure is not a misreading as I've been recorded at 235 bpm by cardiac nurses during a Bruce protocol test: I flip-flop between atrial fibrillation and atrial flutter. That may be a blessing but because I have a history of cario exercise, AF was not diagnosed for many years. When it was diagnosed in my 60s, an EP said that I didn't need an anticoagulant as I did a lot of cardio exercise, my CHADVASC was 1% and I had an haemangiomma on my tongue. Eighteen months later I had a stroke that gave me permanent homonymous hemianopia. I still do cardio exercise so I have AF around three times a week but now I take dabigatran. I found in hospital that some younger doctors don't realise that illness can cause AF, so they promptly put me on an amiodarone IV that to quote a clinician placed me "...close to death...". I'm happy to answer any question that you have.

[Brizzy5000]

Hi

I had AF for about ten years or more, I was sent to hospital by the works surgery, the first time I noticed something was wrong kept in overnight at the time it was put down to too much caffeine, but these events occasionally popped up over time, went to see my GP who put me on beta blockers, it became increasingly problematic she referred me to a cardiologist at the hospital, he treated me with the usual drugs flecinide, bisiprolol etc, which seemed to work for a few years but come last year I was in AF more times than not,

After a year long wait I had an ablation in May 2018 in Bristol and I can honestly say that I have not looked back since no AF or flutter, some eptopics which sometimes scares the bejesus out of me but it's all ok, so for me personally a successful outcome.

[Globe-J]

Welcome (-:

[myrnalynn52]

Welcome, I hope you enjoy the info and the wonderful people and advice as much as I have

[Hidden]

So that we can help you to support the members in the local group that you run, can you tell us more about how it operates? Do you have regular guest speakers? If you let us know where you run the group, forum members who are local to you could attend.

Had you thought of registering your group with the AFA?

[Fibfab]

Hi oyster,

I set up an AF support group in June of last year and it is registered with the AFA, in fact they are extremely supportive. There was good interest from the outset and there seems to be someone new every meeting. Sometimes there is a guest speaker and, like next week, it will be just me hoping to encourage group chat.

It is located in Frome, Somerset, where I live. We have a website affrome.org

I joined the forum because I want to find out a little more about the patient's perspective. I would like to know what areas of support might be lacking so that I can try to implement changes for the better.

Please note that, although I have quite a bit of experience in Cardiology (32 years in the role!), I can only make comments that are my own opinion.

The more I learn about AF, the more I realise just how much there is to learn.