Should I be more involved?

[ElizabethBee]

Good morning everyone. I have only been attached to this forum for a couple of months and right from the start, I was amazed at the knowledge most people have about AF. Talking about atrial flutters, sinus rhythms, ectopics etc. etc. I have paroxysmal AF and something or other to do with an extra heartbeat on occasion? I’m no further forward in learning the medical terminology of AF than I was at diagnosis. I know there is a very helpful explanation of abbreviations in the Admin section at the top of the page. I know when AF happens and I have a fluttering sensation when my heart puts an extra beat in on occasion but as to why it happens when it does is still a mystery to me. I also don’t feel the need to monitor it with special equipment. I have breathing exercises and relaxation techniques in place to help me through the extreme experiences but I don’t think I need to know what it’s all about. I do wonder if deeper understanding of AF can induce stress and therefore more frequent attacks? As long as I have the support of my medications, my GP, Cardiologist and the positive messages posted here, I don’t need to know any more. I admire all those who understand totally what is happening to their heart - is there anyone else out there with AF that, like me, doesn’t feel the need to understand the whys and wherefores of AF or should I be more involved with my condition? 🐝

[Hidden]

Awwww Elizabeth, I really feel for you. I’m sure there are several who are currently sharpening their cyber pencils, getting ready to help you. All I would say is do things at your own pace because although acquiring knowledge is really helpful, it can also be daunting, so pace yourself! There is so much information available on the AFA webpages and as you say, there are many members who will want to help and if someone is unable to help, there is a natty way they can make someone they think may be able to help aware. One of the best sources of quickly finding information is often overlooked and this is the search box top right of this post.

I also know a huge number of people, mainly with persistent AF, who take absolutely no interest in their condition whatsoever, they just take their medication and get on with their lives and wouldn’t even consider joining a forum. So however you decide to move forward, there is no need to do it alone…

[ElizabethBee in reply to Hidden]

Thank you for your reply Flapjack. Have a good day 🐝

[BobD Volunteer]

To be honest you probably have the right balance as you are correct that for many people too much knowledge can be stressful. Be happy with your self and carry on regardless as they say.

If you do reach a point where you wish to learn more then just ask. By the way those "missed beats" are ectopics.

[ElizabethBee in reply to BobD]

Thank you BobD. Much appreciated. Have a good day 🐝

[Teresa156]

I have an Aunt who is in her mid 80s now and was diagnosed with Afib at 60. She’s been taking a low dose of atenolol ever since and only takes baby aspirin and a statin ( her GP has never given her a proper anticoagulant and I don’t ask or question it, or worry her) and she says she hasn’t had any episodes at all for 25 years. She recently had an ECG and was told her heart is healthy, so I’ve no reason to disbelieve her or question it. I know that she has never given her AF ( if she still has it) another thought throughout her life. She drinks wine, eats what she likes and has had good holidays and a very good life. It’s never bothered her. I really wish I could be like her and I think there’s a lot of food for thought there really.

I would say, carry on as you are and if you do wonder about anything, by all means ask on this forum as there’s always someone who may know the answer.

Take care.

[ElizabethBee in reply to Teresa156]

Thank you Teresa. What a wonderful attitude your Aunt has. You see this is what I’m wondering, can too much knowledge be a dangerous thing and lead to stress and worry and eventually to more AF attacks? I think I’m going to take a step back and enjoy life and for the time being, accept it for what it is while it is manageable. Thank you for your reply and have a good day 🐝

[BobD Volunteer in reply to ElizabethBee]

AF may be in your life but never let it be all of your life. Sadly a lot of people do.

[ElizabethBee in reply to BobD]

Yes, it would appear so Bob 🐝

[Hidden in reply to BobD]

Absolutely! A bit of rework that could be a T-shirt slogan ….

[Teresa156 in reply to ElizabethBee]

Yes, do that, there’s no right or wrong way to think about this, but you seem to have the right attitude for you - all the very best, Bee.

x

[Buffafly]

I think it depends on personality, some people feel more in control of distressing symptoms if they have more knowledge about the background to them, others like you accept the condition and cope as best they can. It also depends on QOL because if it is severely impacted by AF most people would want to look for ways to be able to ‘work, rest and play’ in peace ❤️‍🩹

[ElizabethBee in reply to Buffafly]

Thank you Buffafly. You’re correct of course. We are all different and think differently which is a good thing. Have a great day 🐝

[wilsond]

I see your point and, yes sometimes a little knowledge is a bad thing! But also there are those who say " knowledge is power!"

I tend to be in the second group, after some poor experiences with medical professionals whom I trusted to look after me( for other medical conditions in the past)

I like to know what to expect,and if there us anything I can do to support the care I am being given.

The skipping beats are called ectopic,benign but annoying I'm told ( one of my sons has them)

[ElizabethBee in reply to wilsond]

Hi Wilsond. Maybe I would be the same if I didn’t trust my Cardiologist and GP. Thankfully, apart from my diagnosis being 7 years after the first event, I have been looked after and have faith in my meds. Have a great day 🐝

[wilsond in reply to ElizabethBee]

Yes indeed! You ,too ,Elizabeth.x

[Ppiman]

That was a thought provoking post to read - thank you. My own feelings are that, whether or not we choose to know the full picture of our current health and its future prognosis ourselves, our GPs should know this and be able and willing to carry out whatever diagnostic tests are needed.

I feel this since AF is only a label for an observed hyperactivity in one part of the heart. The possible ways the fibrillation can develop, or the reasons it arose initially, can - if only sometimes - be more important to know. As an example, AF can affect the future health of the heart valves and, of greatest importance of all, the left ventricle.

Steve

[ElizabethBee in reply to Ppiman]

Thank you Steve. The importance of the word ‘can’ needs to be underlined. In other words, I’ll cross that bridge if it ever happens to me. Have a great day 🐝

[Ppiman in reply to ElizabethBee]

I’ve edited the post as best I can!

Steve

[Threecats]

Hi Bee

I was having this very conversation with my 88 year old mum only yesterday!

Mum’s been in permanent AF for 12 years now and I’ve been in persistent AF since February. I’m an anxious type and, from the start, have wanted to understand this condition as much as I possibly can to try and help the anxiety. (It hasn’t 🙄) Mum, on the other hand, who was initially hospitalised with heart failure brought about by uncontrolled AF, has been taking the tablets prescribed for her then ever since and has never taken the slightest interest in finding out any more about AF. She has just contentedly got on with her life. Needless to say, of the two of us, she is the happier one!

So I would suggest you do what feels right for you. There are no rights or wrongs with this AF lark!

All the best to you, TC

[ElizabethBee in reply to Threecats]

Hi TC et al. I’ve had such a mixed bag of responses to this post and am most grateful to all who have contributed and made me realise I don’t want to delve into the intricacies of AF. It won’t change anything but could make me more anxious and encourage the AF even more. I’m so reassured to read two posts of elderly women who have had AF for years and just taken meds and not delved into the mechanics. May I thank all who have responded to my post so positively and hope you all have positive outcomes in any future treatments you may undergo. I’ll stick around if you don’t mind, you are a great team. 🐝

[Ppiman in reply to Threecats]

That is surely spot on advice. I have an elderly friend who like your mum has had persistent AF for years. He worries about very little indeed health wise and tells me, “I don’t let myself”. I remind him that he’s lucky it’s the way his mind works that he can do that, but he still feels he’s in control!

Steve

[Desanthony]

Some of us want to know everything we can and that keeps us "at peace" with our condition and our treatment. Others don't want to know very much at all as they just don't like to. We are all different and as along as we are content with that then that's fine. Do what suits you, you don't have to do anything you don't want to do just because someone else does.

[ElizabethBee in reply to Desanthony]

Hi Desanthony. Absolutely, I just wondered if I was the only one who wasn’t taking such an in-depth interest in the AF background and terminology. It would be a boring world if we were all the same wouldn’t it? Have a great day 🐝

[Rainfern]

It’s a great question Elizabeth, welcome to the forum! You’ve really got me thinking 😊

[ElizabethBee in reply to Rainfern]

Thank you Rainfern for your warm welcome. 🐝

[Finvola]

A very interesting question ElizabethBee. I'm one of the 'need-to-knows' and research everything to do with life, not just my AF.

Regarding the AF, there is so much we can do for ourselves to help with symptoms and easing the burden of having an arrhythmia in the first place. I'm thinking of things such as food additives, certain OTC medicines, cardiac drugs and how they work, junk foods and diet generally. The only way to find out about these things is to read up on them and/or talk on this forum. Equally, understanding what ectopics are and how they differ from AF is, for me, important as that knowledge helps me greatly. I also like to understand what my cardiologist is talking about.

The important thing is to do what makes one comfortable - your coping strategies sound good and that is what is important.

[ElizabethBee in reply to Finvola]

Thank you Finvola for your extremely interesting and full reply. It’s good to know how everyone feels about their conditions. Hope you’re having a good day 🐝

[mjames1]

During different phases of my afib journey, at times I've been very involved and at times not involved at all. A lot had to do with how symptomatic I was.

For the first 50 years or so, only a few episodes many years apart. During that time, no involvement, didn't even visit a support group because I didn't need it.

Then when things got a bit dicey, I needed support and wanted some more information and perspective on treatments. Then I became very involved. Did my own independent research and joined forums like this one.

I am also a believer in shared medical decision making and the more I know, the more intelligently I can share in those decisions with my doctor.

Jim

[ElizabethBee in reply to mjames1]

Thank you for your reply Jim. I’m amazed at how long you have had AF. I’m only a newbie and have a lot to learn. Sending good wishes. 🐝

[Omniscient1]

Lots of good posts here. It's all about how you feel about it. But note that there are 30,000 ish people on the forum, so most don't look at all, and many read but don't take part. It's up to you.Welcome.

Gary

[ElizabethBee in reply to Omniscient1]

Thanks Omniscient for your reply. I had no idea this forum had so may readers! Have a great day 🐝

[Omniscient1 in reply to ElizabethBee]

All the very best people are on it, but none of us want to be

(* AF in 2-3% of the population!)