Top tips 💚

[Fibfab]

Hello again,

As I previously mentioned, I am keen to offer advice to those with a diagnosis of AF.

I have a few ideas of some tips on living with and managing AF but would love to know what your thoughts are?

Thanks in advance 😉💚

[Hidden]

I must have missed something. What did you previously mention ?

[Fibfab in reply to Hidden]

The reason I joined the forum is to try to help those people diagnosed with AF who I come into contact with.

[rosyG]

it's probably most useful to follow the posts and offer advice when someone asks about something you have possible answers for??

[Fibfab in reply to rosyG]

Do you think it’s inappropriate for me to be part of the forum?

I only mean to learn more about AF from a patient perspective for the benefit of other patients.

Again, I do not mean any offence.

[Violetta25 in reply to Fibfab]

I don't think it's inappropriate at all! I'm very grateful someone's taking the time to help. In fact I'd be very grateful if you would list your top tips so that we could peruse them and take advantage of any that apply.

[Hidden]

Hi! Having read your previous post I think you should have mentioned at the outset that you are a Cardio Physiologist wanting to understand AF from a patients perspective.

Did you want to run through your tips with the forum before presenting them to your patients?

Sandra

[Fibfab in reply to Hidden]

No offence meant.

Yes, I want to give the correct advice and, obviously, as I do not have AF myself I feel it important to listen to those diagnosed.

[Hidden in reply to Fibfab]

No offence taken at all! Good to have you on the forum. I'm sure your patients will be very grateful for the extra knowledge you will hopefully gather here !

Sandra

[Hidden]

Hi Fibfab,

I wasn’t sure what a cardiac physiologist was. Is this description from the BHF site a reflection of what you do?

bhf.org.uk/informationsuppo...

Welcome to the forum, it’s good to have a practising health professional on board. Looking forward to your input.

[Fibfab in reply to Hidden]

Yes, oyster, that’s what I do and I love it ☺️

[rosyG]

I think it'sgreat- how can it give offence!1 The more information we have the better. We have a support group in Epsom with great consultant speakers every month and patients put questions You=re welcome to attend that if you are near enough. You could give us a talk sometime if you wish so people know more about your role

[Fibfab in reply to rosyG]

Thank you, rosyG. I did part of my Physiology training at NESCOT, actually ☺️

[BobD Volunteer]

So long as you are not trying to sell anything and abide by the forum rules I can see little problem but please note that the content of anything from AF Association has had to be approved and vetted by our medical board and NHS England so maybe it would be a good idea to contact the office and discuss what you wish to put out here. For example the fact sheets on Preparing for and Recovering from Ablation which I helped compile took three months to be approved before publication.

[jeanjeannie50]

Welcome to our forum. If you do a search on this site you will find all the information you could possibly want. On a PC, the Search Health Unlocked box is top right of this page.

Jean

[Hidden]

Hiya Fibfab,

OK, kool - it now all make sense.

Welcome.

One of the things you'll discover (if you hang around long enough) is that AF is all things to all people ..... from original symptoms, to speed and accuracy of diagnosis and onto types of treatment on offer and actually used with patients.

For me my symptoms bore no relationship to heart at all - I thought I was going down with flu.

Yet within some 9 hours I had seen my GP who had me booked into A & E at East Surrey Hospital, Reigate where I ended up staying for 6 days while they carried out all manner of tests and set me up with medication. Actually, they had the diagnosis and treatment started within a matter of hours after entering A & E.

From when I developed flu like symptoms at home that morning of 6 January 2010 I did some random BP checks on my BP device. Back in the day my normal BP was around 136/80 plus and my HR was around 85 to 90 ish. And over time these values were constant irrespective.

This day by late morning I had noticed a massive number of 'Error messages' on my digital device, and when readings did occur they were trending downwards. By late afternoon this trend continued and I got as low as around 78/50 .......... my HR maxed out at 156 and I was feeling pretty crap. Hence my visit to my GP and A & E.

The rest is history.

I have followed this forum over the years and must say there have been a few whose experience has been like mine, others have their onset disguised/ masked in other ways and the great many have a total different set of initial symptoms at the start of their AF journey.

A tip for you is to click on my user name and you should be able to get more information. Experiment with mine ... carneuny. It should enable you to see posts on here which you may find interesting. My theme is diet, food eating plans and lifestyle ( which is important with managing my AF) but you'll probably find other stuff too.

John

[CDreamer]

Personally - I think my 2 best tips to share with patients are:-

Signpost to the AFA website - they have done a lot of the work for you.

Signpost to this forum - blogging and sharing, arguing and empathising all have their benefits and help us to decide what helps in our situation.

I learned more in a couple of hours from those sources and felt more reassured by ‘chatting’ on this forum than from anything a medical professional said to me, although many were kind, explained things well - from their viewpoint but which often varied depending upon their training, competence and viewpoint.

The best advice I can offer you in order to help your patients is to listen to your patients, accept what they are telling you about their experience - which will be very individual - and offer advanced empathy - not sympathy!

You might also look at Dr Gupta’s from York Cardiology videos - as an EP who suffers from AF himself - his way of explaining and the talks he gives really, really help us to understand. youtu.be/dzK0eGOeIDQ(Not working as expected?)

Every AF sufferer I have ever met, has suffered anxiety and so reassurance, reassurance, reasurance without being dismissive is important.

Well done you for being so proactive - I don’t think anyone has taken offence but expanding a little more on your intention in your original post would have really helped.

Very best wishes - CD

PS - It’s not quite correct to say we are all not medically trained as there are quite a few medical professionals lurking on this forum and occasionally chip in if and when they believe it appropriate. Even so, the depth and breadth of knowledge shared here will often take your breath away.

[avma in reply to CDreamer]

Hey,

Does Dr Gupta suffer from AF? I saw already a lot of his YouTube videos and didn’t realise that. As a doctor he had no ablation then?

[CDreamer in reply to avma]

I am not privy to his treatment plan - I only know what he has disclosed over the years. Ablation is not always the answer for everyone. I’ve had 2 & still get AF.

[Violetta25 in reply to CDreamer]

Mr Gupta is good i just wish he could be a little more concise. It takes over 4 minutes on this video to get to the important stuff.

[avma in reply to Violetta25]

True, I always speed it up to get to the main idea 😉.

[Alessa69 in reply to Violetta25]

I think it’s amazing that he finds the time to share all this fantastic information with us. I have found him to be so helpful

[Profound15]

Good to have you on board. I agree with the last post I think you have to try and manage afib through diet, exercise and for me no alcohol. When afib happens it’s horrible so I’ll do anything to try and prevent it. I now have a high fibre diet and take magnesium supplements. I also try and keep my potassium levels up. I have had ectopics for years but my diet and the supplements seem to help.

[Omniscient1]

Hi Fibfab,

Welcome. I have permanent AF - so I get off lightly compared with those who get it remitting and recurring. I'm M, 56 and CHADS=0. The diagnosis is 10 years old, and I've probably had it for upto 18years (Last time I had a hospital stay when I woudl hope they woudl haev seen it on a monitor had I had it then). For my part as I have had no hospital intervention apart from a test it remains a mystery to me (though I accept the consultatnt knows what he is doing) why I was not put in for a cardioversion or ablation when I had the diagnosis, and this is symptomatic of (my) experience both with my GP and our local teaching hospital. Its as if due to its very ubiquity it is treated as a lesser issue.

Anyway, one thing I have learned from this forum is that we're all different and our treatments and sufferings are completely variable.

Best

Gary.

[CDreamer in reply to Omniscient1]

My understanding is that treatments are only offered to relieve symptoms- if you are not symptomatic then you are unlikely to be offered a treatment - other than anticoagulants which is a prophylactic against increased stroke risk.

[Barb1]

Also to remember that even people with healthy lifestyles can have AF, often inherited.

[Love100cats]

I hadn't a clue that I was really ill. I couldn't be! I was the carer for husband for 30 years following his attack and decline as well as my stepfather with cancer and my mother with heart failure. (Both deceased) I thought I was having panic attacks and a chest infection. I had been to g.p. and she diagnosed irregular heartbeat following e.c.g. but said not to worry as many had same. I continued to get worse. So breathless I couldn't get to my car without struggling. I told her my feet were swollen in the morning but still not to worry though she did find my underactive thyroid. I went to see duty doctor he looked at my ecg and put me on furusemide. Just a few days after I felt so Ill

with a weight on my chest I called 111 and they sent an ambulance. I was diagnosed immediately with h.f. with a.f. left ventricle, rapid heart rate (160) left atrium dilated etc. Due to inherited h.f., high b.p., over weight. I was put on medication and sent home. I haven't seen a cardiologist since, have had just the one echocardiogram and I'm looked after by HF nurses.

I am 78 yrs old. I felt neglected to start with but 8 months into my journey I realize that the meds are doing their job. My heart doesn't race, I'm not breathless though I don't exercise yet, I'm coping with looking after husband and little bungalow. I don't get out much as cold weather affects me. I've had furusemide adjusted due to a bit of fluid build up. I'm on Bisoprolol 7.50, furusemide 140, losartan25, Apixaban 10, Spironolactone25, amitriptyline 10, levothyroxine 50, simvastatin 25.

My worries are where I'm going? What next? Exhaustion. Psoriasis can mad.

That's all I can do for now.

[avma]

Hello,

Do you only give tips for AF or also for other kinds of arrhythmia like atrial tachycardia?

[Fibfab in reply to avma]

Avma,

I am still learning how to help patients and realise there is so much to know. It’s a vast subject which I find extremely interesting. My specific area of interest is AF but the type of advice/tips I personally would give are useful for anyone with any type of arrhythmia (or not, actually)

I believe it’s important to listen to those with the diagnosis and that’s why I joined the forum.

Perhaps I should post my list and see what the response is? 🤔I’m sure if I’ve missed anything crucial it would be pointed out ☺️

[avma in reply to Fibfab]

Good idea!

[CDreamer in reply to Fibfab]

I would be open to learning😊👋

[Eirecara]

Hi, I am egerly awaiting your tips on “living with, and managing AF” ☘️

[Hidden]

Hello, Im in the US. I would like to know more about your thoughts as a cardiac physiologist. Im soon to be 66, female, recently retired nurse. I was diagnosed with PAF 12/15. Ive avoided ablation and currently only taking anti- arrhythmic as pip. I do take low dose betablocker mostly for blood oressure that seems to be slowly creeping up. My biggest thoughts on fighting off the a fib monster are healthy lifestyle changes. Destressing my life considerably by retiring, meditation, wt loss( down 40 lb, 30 left to go), daily exercise( at least 30 min), mediterranean type diet, spiritual faith in God, no alcohol or smoking, all seem to be helping me out. I havent had an a fib episode in almost a year, a record for me.

A fib is so different in each person. Im thankful I dont have any structural issues with my heart. I do have some ugly osteoarthritis in my knee that has been a challenge. They want to give me a new knee but I cant do it( yet anyway) I bought a recumbent bike a yr ago, that has helped me greatly. My knee is much better with less pain now. I just need to push and get rid of the extra weight. Spring is near, I do better mentally when I can get outside.

Please share your thoughts!

[Alessa69]

Welcome! I personally would love you to share you tips on living with and managing AF. I was diagnosed last September, after a planned Ablation for what was thought to be SVT episodes, as captured on ECG. This was after many years of “uncertainty” and investigations. It was such a relief to actually know what was going on, and to be believed at last! I used to be very fit , did a job that put great stress on my heart. Over the years, fitness much diminished and carrying too much weight now, which am desperate to shift. As a carer to my once very fit, active husband, stress has crept in a lot over the years, much of which I just have to live with, there is no simple remedy or antidote, it’s just the way Life is, but sometimes the stress can be overwhelming. 1st 3 months past diagnosis, felt great, sheer relief really! Had a good winter, no chest infections, which is great, medication doing the job. Rivaroxaban& Flecaneidecas a PIP.

Any tips , observations that you can share advice re AF would be much appreciated. Advice re a reliable method of checking heart rythmn? ATM I do not use anything except an Omron BP Monitor, but my EP suggested maybe to get a Kardia device? Any thoughts, can’t afford huge outlay, so want to make a good decision