May or will?

I have read on this forum and other sites that AF MAY get progressively worse, but also that it WILL get worse. Which is it - may or will? WILL is quite scary, but MAY has a degree of comfort associated with it. AF appears to be such a mongrel condition, with long term understanding being very limited so how can anyone say without question that it will definitely worsen?

18 Replies

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  • My Cardiologist says that I have classic AF. My symptoms have evolved, not helped by different medications that have different side effects. It has very definitely got worse. It is more frequent although in some respects not as severe because the medication can damp down the symptoms. It would be unwise not to expect it to get worse.

  • I'm sure that someone will be able to quote sources, studies or statistics about long term AF. One of the problems with support groups is that they tend to be skewed towards people who have or continue to have problems. Those who have respite tend to be less active in forums such as this one or give up contributing altogether. So there is very little information about positive experience of AF long term.

    I would also question the meaning of the word "worse" in the context of AF. Does it mean more frequent episodes or the same/similar number but with a higher heart rate? Does it mean episodes which have become symptomatic as opposed to asymptomatic? Or does it mean that symptoms have become more disabling than they used to be?

    What is tolerable to one person may be intolerable to the next. I am thinking about the various treatment options particularly especially medication versus procedures.

  • You make some good points there. Speaking for myself (and that's all we can really do with this condition isn't it), I feel my AF is getting worse. I've had it for at least seven years and, although I believe the medication I take is controlling it to some degree, my episodes are more frequent than they were. However, although I do now occasionally get symptoms like coldness in my extremities and slight dizzyness during an episode, it's rare that I do - so my AF might be getting "worse", but I'm still able to carry on virtually as normal when my heart is playing up and, if I knew that the condition would progress more or less as it appears to be now over the next decade, I wouldn't get too worked up about it.

  • Interesting question. I have read in many studies in UK and USA that AF is ALWAYS progressive. How does one quantify worse I wonder. For many people it will be a change from an attack once or twice a year to monthly, weekly etc and in extreme circumstances to permanent. Many people in permanent AF are asymptomatic. Ask Beancounter, so is that worse than waiting for the next attack. I doubt it. .

    One big problem is that there is no one size fits all for AF and we all suffer/ recover differently .

    I agree about the skew on forums like this as so few of us oldies still hang around. There are plenty of success stories from ablation and one or two from stable drug regimes.

    Bob

  • Can I be one of the 'oldies' who doesn't have AF any more? AF began for me about 6 years ago, and I was very poorly, with exhaustion, dizziness, nausea etc. etc. and had to rest most of the time. It really wrecked my life. I had a pacemaker put in after about 2 years, then over the next 4 years 3 ablations. The last one was very successful in August 2013, and to date no more AF!

    I don't know what to expect for the future, but meanwhile I have changed my diet on the advice of a nutritionist. I don't have wheat any more, or dairy products, or caffeine, or sweeteners. Sometimes I cheat a bit, but I feel so much better not eating bread made from wheat, and my digestive system likes it too. No more dreary constipation and stomach pains. So at age 71 I feel like a teenager, although I can't do as much as I used to. So sometimes it is good news. Hope it will be for you.

  • Hi

    I am in permanent AF - at present I am fortunate to have no symptoms.

    My biggest concern is not knowing if and when I will get any symptoms - and if and when I do, will they start gradually or full blown.

    If I get the occasional chest pain or breathless, I automatically think to myself is this the beginning of the next phase in my AF.

    I try to plan ahead as if I am not going to get any symptoms - and try to remain positive and thankful I was randomly diagnosed.

    If only we all knew how we would individually progress, then I wonder what I would be writing now.

    However, what I do know is, that whatever happens next, there will be an abundance of kind people on this forum to guide and advise me and others through the next stage.

    Take care

    Marion

  • I have runs of feeling fantastic and last night for example I was in and out of AF all night.today I feel tired and worn out.....tonight might be fine...I should imagine if nothing is done to slow progression of this disease yeah it will get worse

  • My own experience is that it got steadily worse until it became permanent, at which point i had an ablation , which stopped it happening. However I had made no changes to my lifestyle during the period of deterioration as my doctors failed to accurately diagnose the problem until it became permanent.

    With hindsight I consider my eating habits were a big contributory cause to the problem and would comment that in your case it is highly likely to get worse unless you make lifestyle changes which address the fundamental cause of the problem. Unfortunately the medical profession cannot tell you what they are so we end up on a board like this looking for clues.

    I suggest you look at all posts from srm grandma , who has reversed the progress of the disease by dietary changes.

  • I am on a stable drug routine after three ablations and at the age of 57 now have a semi - physical job. BUT if I get tired off it goes again and no alternative but a rest and decent nights sleep. I think this is the question people dodge round, I'd like to know as I need to plan my life a bit. I have some markers that indicate a possible cancer risk too and although I am sure they don't really know, I'd like a bit of an answer as to the likelihood of developing that too. Meanwhile I carry on like each year is the last doing everything I possibly can in it. But if I was going to get worse/get cancer I might re think work a bit and concentrate on sorting out my house and affairs - I simply don't have time round the full time job.#'

  • Lis, your comments about cancer worry me.

    20 years ago I was diagnosed with malignant melanoma when a mole on the back of my arm went rogue. I had never sunbathed in my life. I was told that I was going to die. Total panic - I had 2 boys, aged 10 and 8 and a husband who was away most of the time captaining a ship.

    I went to a Cancer Help Clinic. The Doctor asked why I had cancer and he did not. He went on to explain that my immune system had broken down but that my body was perfectly capable of dealing with cancer. We needed to bolster my immune system. This would involve hefty doses of vitamins and minerals and a simple diet devoid if chemicals. I think this is very similar to dietary advice detailed on this site recently.

    I tend to consider choices of foods eg bacon but no smoked bacon, water but not cola, well cooked meat but no charred bits. Always wash fruit to clear any chemical residues.

    We need to take care of our bodies by eating properly.

    Best wishes. I hope the new job is going well.

  • I liked your post, Jennydog! Yes, food is medicine and the right eating and lifestyle absolutely can switch off genes for cancer and be preventative. Glad you got that message from your doc when you needed it. Be well!

  • Thank you it is and as I get older I am fussier and fussier about food - not what I eat, I love everything but where it comes from. This is mainly a preoccupation with animal welfare and sustainability but I have found that if you make choices for that then you also choose less processed food produced in a more enviromental way. I am not interested in the arguments for and against organic and free range, to me it is morally right and sensible from the point of view of chemicals etc to choose these. And of course the advice on having water instead of fizzy drinks amused me, why would I want to drink sugared chemicals? Of course wine is a differentt matter.....

  • Hi,

    I had an atrial valve repair 6 years ago (aged 70) AF began about 2/3 years before that. After the operation AF continued and is still the same today so after 6 years I would call that persistent AF unfortunately! Ablation has not been considered, and the other treatment (cannot remember what it is called!) my heart reverted to normal for about only 2 hours. Taking Warfarin, at present 2 mg per day, Diltiazem 180 mg, and Digoxin 125 mg. My consultant has said he does not want to see me again unless the symptoms worsen, does he mean when I pop my clogs? Anyway, I keep going trying not to cause too many complaints at the clinic! Oh yes, My lower 6 vertebrae is painful and I cannot walk too far, use a stick and get breathless, is it my age, or the drugs? I try to keep cheerful and keep going! The old heart does not seem to mind ticking away all over the place so why should I worry! So every body, keep as cheerful as you can!

  • I am female and now 61 and was diagnosed with (symptomatic) Lone Parox AF 8 1/2 years ago, although from talking with GP and cardiologist at time of diagnosis it looks possible I have had it for most of adult life. Since a rough first 6 months, which may have well been me getting use to AF, medication and my body settling down my AF has got better. Yes, I guess it is the medication but I have been on the same dose of Flecainide 50mg x 2 daily since the word go. I get breakthroughs lasting from 6-18 hours but they are tolerable and getting better. The first one after the first rough 6 months was 10 months away and they are getting further apart each time. Longest has been just over 2 years.

    I have the odd day of feeling tired, a little bit off kilter but that could be age and the fact that I think I'm still 25 and superwoman and push myself to the limit a lot of the time.

    I also take lanzoprerzole (for acid) and 25mg aspirin a day, which is a bit of a bone of contention and in light of latest NICE report will be discussed with GP next visit. That could be anytime as I haven't had to see GP for anything for over 18 months.

    You will read lots of things on lots of sites and I agree with BobD, how do you quantify getting worse and no one size fits all.

    I am a lurker on here mainly because I have AF so mildly, very well controlled and nowhere near suffer like so many and yes, feel slightly guilty when I read others stories. For me flecainide was the wonder drug (intravenously) at diagnosis and tablet form since and remains so today.

  • Just to try and pick up and a couple of points in there, I haven't yet heard of anybody who is asymptomatic ever suddenly developing symptoms.so Marion stop thinking the worst.

    Secondly and this is really a life thing, Don't think about what might not happen. This is you today. get used to it and enjoy life to the full. Yes I wish I was 37 again and still running a successful race team but I'm not. Still have fantastic memories mind you.

    My wife believes that life is like a computer and what you think about can happen so don't say "I hope I don't get cancer" or the computer will only pick up the "cancer" and open that program.. I didn't want prostate cancer but I must have thought a lot about it as I did. Then I decided that it wasn't going to get me and I still had a huge amount left to do in my life so that was three years ago and I'm still here. It ain't easy but nothing worthwhile ever is.

    Like Liz, grab every precious day, rain or shine and enjoy it as if it were your last because one day you Will be right. lol

    Bob

  • I have been A/F for nine years. I am 73 years old so it's impossible to determine if my condition is worsening or is the result of advancing old age. However, I have always been a believer in common sense and applied logic as opposed to believing every thing I read. My opinion - long story short - If your heart is functioning defectively 24/7 (A/F) it will almost certainly wear out quicker than a normal functioning heart.

  • I was diagnosed within 9 hours of onset and treatment by medication started immediately ....... that has put me a million light years ahead of others plight I've read on here. Medication continues in exactly the same doses today, 4 & half years down the track. No surgical intervention at all. Mine is vagal in practice and I've supplemented medication with a fairly strict diet and cannot now recall my last AF event. Doesn't mean I'm clear by any means but I'm tempted to say WON'T get worse .... now thats casting fate to the wind innit !!! :-)

    In my humble, non medical, non scientific opinion early diagnosis and intervention is VITAL to any successes in controlling this condition going forward.

    Aussie John

  • Hi Langara! Yes, I have read many scholarly articles that say AF MAY worsen. While it often does progress, or even usually does progress it absolutely does NOT always progress. I have a couple friends who had 1 episode a decade or more ago and no further episodes. Personally mine has an ebb and flow with periods of dormancy and very predictable periods where it is more frequent when I am stressed or worried and not sleeping well. I think it is fairly recent that they are beginning to understand that AF, when there is no underlying heart disease can be well managed with lifestyle interventions that do not add more risk. After having AF for 11 years now with always self limiting episodes that last less than a day my EP says it would be highly unlikely that I will ever have permanent AF, and in fact we are watching it improve.

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