Living with AF long term: Hi all, I'm... - AF Association

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Living with AF long term

Pikaia profile image

Hi all,

I'm interested to hear how long you have all had AF. As a 37 yr old, I'm keen to understand how, in your experience, AF has progressed over the years.

I'm particularly keen to hear from those who were diagnosed in their thirties or forties. How has it changed? What lifestyle changes have you made? How long have you taken medication for? What have been the long term effects for you?

I'm still trying to get my head around this new reality and it would be great to hear your experiences, and whether you have gone down the drug or ablation (or both) route. Thanks!

11 Replies

I first had medication for high blood pressure when I was 37 and started to have occasional dodgy heartbeats - mostly tachycardia and about once in six weeks - about 27 years ago when I was about 43. I had two small children at the time and feeling I owed it to them to keep fit and eat well, I'd already been paying attention to lifestyle. I was eventually diagnosed with AF six years ago and took quite a lot of flecainide in the next four years. I'm 70 now and feel I haven't deteriorated significantly since my heart first went off the rails. I've had three ablations and apart from the fact that I still have AF every now and then, I'm not displeased with the way I am. My father and my sister died in their forties (pneumonia and malignant melanoma) and my mother died of cancer at 64. They didn't have any heart problems and I think I'm doing OK and feel very lucky.

Pikaia profile image
Pikaia in reply to Rellim296

Thanks. Your reply is really encouraging. I have a young daughter and I'm feeling exactly as you were. I want to pay attention to my lifestyle and make sure I'm as fit as well as I can be for as long as I can be. I think you're doing more than OK!

Rellim296 profile image
Rellim296 in reply to Pikaia

AF does keep us on the straight and narrow and I think many of us have improved general health because of it. As scottishmuppet says, it can be a wake up call. although for me the responsibilities of marriage and parenthood had already made me feel I had to toe the line. What I didn't add above was that I had cancer when I was 45 and would have been very pleased to reach 50 and over the moon to see my children reach 21. They've both turned 30 now.

Hi I'm 49, diagosed last year. I had the same concerns as you and have tried to improve my lifestyle in general which will doubtless help long term.

My mum died of cancer at 65 as did her mother. She was inexcellent health until the moment of diagnosis 4 weeks earlier.

I have heard of dozens of people with AF all of whom are trotting along nicely. With over 1m sufferers living with AF in the UK alone I can't see how it can be all that tragic.

I just take my medicine, make what other tweaks I can (with good advice here) and keep an eye on medical advances. It seems to be a condition which affects lots of white middle class men in America so no doubt huge amounts of cash is being thrown at research 😁. All we need is for Trump to get it and the magic pill will doubtless not be far behind 😂.

There are so many rotten things people live, not just in a medical sense, I have taken AF as a wake up call to improve my overall wellbeing rather than as a pointer towards an unhealthy or shortened life. Google Dr John see what interesting stuff he has to say. Best wishes.

Thanks. I'm still getting my head around having AF. It's really helpful to hear other people's stories. As my wife remarked 'OK, now you know what it is. It could be far worse so just get on with it'. Like you, I'm taking it as a wake-up call. No more (or at least fewer) biscuits, more gym and more appreciating every day.

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Hidden in reply to scottishmuppet

In a nut shell:

Diagnosed when 36 four years ago (Permanent AF). Cardio version unsuccessful. Flecadide and bisophonol taken. Got on with life relatively few symptoms was carrying on with life. Cardio version again this time successful for about a month. When returned had a lot more symptoms. Then had 3 ablations. Not fully successful but only have occsssional bouts of AF. Now probably feel worse than have in all time - just trying to discover what causes the symptoms - drugs, heart, anxiety. Started on nebrvolol today and started counselling this week so hopeful of finding a solution.

Pikaia profile image
Pikaia in reply to Hidden

I'm sorry to hear you feel worse than you were before. Sounds like some of it at least could be anxiety. Hopefully the counselling will help separate it out.

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Hidden in reply to Pikaia

Thanks. AF is a journey. Somewhere out there is a solution where the quality of life you want can be achieved. It can just take a lot of adaptations and trial and errors to find it. Although at the moment I haven't found it I know I'm progressing on that journey and finding what doesn't work helps in finding the right path. Positivity is a key.

My outlook on AF changed when I found this site there are a lot of positive posts and information on here that will help you. But as someone once posted we are probably some of the worst case scenarios. There are over a million people in the UK that we know of who live with this condition every day and who are not on this site.There are also a lot of people who no longer visit here and I would like to think its because they have been able to get the right treatments and no longer need the support.

If you type AF progression in the box on the top right corner there is a post on there that asks this question (Is it possible AF does not progress) it has a forty very different answers to that question which I found very interesting.

Pikaia profile image
Pikaia in reply to souljacs4

Thanks souljacs4. Yes, there's more of us than I realised!

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