When l was diagnosed with AF., six years ago, my Cardiologist, at that time, told me that AF was not life threatening. I have always used this information as a coping mechanism when l have an episode. It keeps me calm and lessens the severity of the symptoms. I have, on occasions, passed this information on to other’s in the hope that it will also help them. However, recently, l have been getting replies that are telling me the opposite and that AF can lead to heart failure or worse can cause a cardiac arrest. There seems some crossed wires here, so could someone please explain this to me? I am still a novice and l know some of you are more experienced and knowledgeable than l am. Thank you.
Is AF life threatening or not? - Atrial Fibrillati...
Is AF life threatening or not?
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Cavalierrubie
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BobDVolunteer
AF alone no. Allied to poor choices possibly. The only direct death of somebody with AF I am aware of is a chap who had a heart attack whilst running a marathon. This is why I usually mention this.
In the last couple of years there does seem to be evidence that uncontrolled AF may lead to heart failure but of course this is not in itself always fatal unless ignored. There are plenty of cases where HF has been reversed following control of the AF either by better drug regimes or ablation. The relevant point here is uncontrolled AF which usually means rates over 100 for prolonged periods or 200 plus for much shorted ones. Obviously one must also add anticoagulaation to reduce stroke risk where appropriate.
One must remember that lots of people have had AF for quite some time before diagnosis and have been largely asymptomatic so unaware of it until either the stroke hits or it is found during routine medical checks. For those a lot of damage may already have occurred which may tilt statistics.
Thank you very much Bob. That is very explanatory and helpful. It is feasible that it depends on the condition of the heart initially and, of course, any comorbities. With AF being difficult to detect and not being treated, it must do some damage,as you say, the heart is not protected. I will continue to say to myself that it’s ok.
Bob, I'm concerned about you. You're on this forum so much lately and giving long replies. After you telling us what your wife had said about you 'always having something'. I think the only reason you're here more is because she has chained you to your computer desk. Do you need help and should we muster up a rescue party?
Jean
Jean, No l don’t think so. They say “A creaking gate lasts the longest.” 😂😂😂😂
Oooh!
Bob has answered me with a private message, all is well.
Good ! Jeaneanie ! Your message to Bob worried me . L
I am thankful for your replies.
Hmm, I hadn’t thought that Sam had chained Bob to his computer but likewise had noticed Bobs replies were longer these days. I had put it down to weather and not being able to go out and make mischief.
🤣🤣🤣
Jean
Trouble is that most of us afers rely on the wealth of knowledge that Bob has.
I am guilty of it.
I doubt if Bob will stop but I just wanted to register my appreciation of him.
hahaha I love you all! What a great and caring community. 😊❤️☀️🌷
My AF has been ongoing for 20 years 3 ablations failed I progressed to permanent afib then HF this is what my cardiologist told me
Atrial fibrillation arises from the L atrium which like the R atrium is a very thin walled chamber. When AF occurs and is long standing, the atria enlarge. It always happens I'm being treated with jardiance now for the HF
How long does it take for the atria to enlarge.? I was diagnosed by chance 6 years ago, although I'm sure I had it for some time before diagnosis. It is familial, my younger sister was diagnosed in her early sixties, but the rest of us (we are a family of five girls) all received our diagnoses when in our 70s. My last echo, six months ago (I have one annually) showed no enlargement of the atria. I am basically asymptomatic and currently have the PAF version !
I think it was quite a while till it changed to permanent then HF only diognosed with that a year ago so I'd say about 2or 3 years ago the enlargement of the atria showed up and affected the heart to induce HF
On a lighter note the new drugs for heart failure mine is the HFpEF type do make life much easier and there's not much I can't do
I just thought I should ask: how does someone with bradycardia like myself (my pulse rarely goes over 60) fit into all this? Will my atria enlarge? Will I go into HF? I know I need to ask my doctor these questions but I didn't know what I should ask when he diagnosed me a few months ago then gave me an appt for a year down the road.
It is something you need to ask a medically trained person. Personally I have no idea as to which component of Afib causes the enlargement, if it is the fast pulse or the fibrillation itself or a combination of both. Given that the first drug prescribed is usually Bisoprolol to control the HR, I have to ask if that if the culprit, I don't know.
Hi. My cardiologist is considering Jardiance for mild HF due to AF and some valvular issues. Did you have a BNP PRO test...what was your level? Does your insurance cover Jardiance for HF?
Sorry for the late reply I had the BNP PRO test years ago and it was ok then but I had a right and left heart catheter just over a year ago
It diognosed left heart diastolic dysfunction and heart failure.
I was put on Jardiance a year ago now.
It has improved my ability to lead a normal life now .
I'm in New Zealand so medications are free at least at the moment .
We have a new government who is rubbidh and has no sympathy for the sick and are quickly ruining our health system so who knows for how long it will be free.
I have been taking jardiance for a few months. I thought l would feel better on it but it has made no difference at all. I a m still breathless, faint and weak. What other drugs do you take? I don't drink , smoke or have any ultaprocessed foods.
My understanding is it is NOT !
However, if a person has other cardiac issues, maybe genetic, that they are unaware of, that changes things significantly.
Thanks John. This is a scary condition at times isn’t it? Thank goodness for this forum so that we can be pacified immediately. Hope you are feeling better now. Have you retired yet? Take care.
Hiya Cavalierrubie,
Yes thanks feeling much improved. Working through my instructions from my Cardiac Consultant with Sotalol ....... not impressed with the drug - but getting there. Certainly it has given my BP a massive kick in the ass and it has dropped ..... and become more stable, yet it leaves HR high ( in the 70's ) which I'm happy with.
My retirement date has now been agreed as my end of shift on 5 July ... park up the bus and walk away ..... after 32 years, won't be easy. But then again I have so many projects to do at home. I shall still miss playing with my 'Big Toys'.
Unless I have a real big problem with the Sotalol my Cardiac guy doesn't wanna see me till late September. For me, although my heart is pretty clapped out the most important thing identified is the calcification of the coronary arterys ........ yet not to the point that impedes blood flow ....... yet ! So for me, having paid money for this private Cardiac guy has been a blessing because working together with him I have a goodly chance of keeping the demons away. My retirement will see the advent of many, many regular walking trips around the Estuary where I live ........ and so bit by bit I am opening up to a more healthy life which will also - along with my meds - help to subdue the calcification process.
Finally, I've cut my booze consumption by about 90%, also on the advice of my new Cardio man.
John
Good to hear you are doing so well and have some professional help. There are lots of little fighters on here who are an inspiration and you fit the bill. All the best for your retirement. It is a big adaption, but most people, after a while, say they don’t know how they had time to go to work! It’s the best time of year for you too, if we eventually get some summer. Take care.
Hi so your retiring from bus driving? Only asking as my son is just starting!!
Yes, indeed. After 32 years "On the Buses". Later today I will PM you with my comments for your son. All very positive stuff.
John
Taking vit K2 might help the calcification . There are some studies that show a higher dose can reverse it a little. There is somebody on this forum who takes it alongside Warfarin and says it helps stabilise his INR.
FYI. I tried both the MK7 and the MK 4 type because I have osteoporosis and they both caused a fib.
Hi Fblue, how do you know that k2 caused your afib.
Because it happened every time I tried it
Interesting, I have been taking mk7 and mk4 for years but took afib long long before i ever supplemented with k2.
I’m not saying that’s why I have a fib. I’m saying that it is a trigger for me. I am sensitive. The same thing happened with coq10.
It can lead to heart failure which is life threatening.
...and so can carelessly crossing a road too.
So can hundreds of things but the subject is a.f. You can't ignore it. It has to be treated.
Right! So, lets get one thing clear - AF is a hydra-headed monster. It is all things to all people. It is the most untrustworthy thing I can think of, other than politicians making promises at election time! Further, when a patient first manifests itself with a cardiac problem not all seek treatment immediately and consequently they suffer the outcome of a heart condition outta control.
In my case my AF started with my getting up and feeling as if I was going down with flu.( it was 6/1/2010 ... so mid winter. Why not flu ? ). My BP ( a favourite yardstick of mine ) the previous night was 132/76 with a HR of 87. Nothing dramatic about that and the highish HR was something I'd been used to for years. Some 17 hours later my BP was 76/56 with a HR of 85. That was my 'Apollo 13' moment when in the movie Tom Hanks says, 'Houston, we have a problem'. I phoned my GP who invited me to see him immediately and then booked me into A & E immediately.
So within 10hours of feeling unwell with flu I was bedded down in A & E wired up for every damn thing imaginable and be tended by an absolutely drop dead gorgeous young A & E Dr. and a HR of 156 bpm. 6 days later I was returned home and to the care of my GP with the diagnosis of paroxysmal AF! In the weeks that followed my BP bobbed around all over the place BUT my HR steadied at around 65 to 73 bpm. It isn't far off that even today when I'm an old git of 80.
Also, for your information, I have been on this forum forsome 14 years, both in this incarnation and in the previous one back in the day hosted by Yahoo. I have never read of any potential AF victim getting the treatment as quick/speedily as I had. From what I can see in todays modern broken NHS, a patient would be lucky to get that diagnosis and treatment started in 10 weeks, much less 10 hours.
It is a fact that my 10 hour treatment by my medical peeps has contributed significantly to my low AF burden in the years that followed. I did the rest myself ..... yes all on my ownsome! I identified the onset of AF with food I'd eaten. That in turn brought me into the realms of Vagal Nerve ...... and the rest is history. Sorted! AF booted into touch.
Yeah ! as you say ...... it has to be treated ..... I don't need a lecture on that BUT again in todays NHS good luck with that one.
Absolutely John. The unfortunate thing here is that, for some, they don’t know they have AF. It can be silent ( mine is like an earthquake with enough gas to fill a hot air balloon.). This is where there probably can be problems with deterioration in health. I think there was a suggestion, some time ago, that there should be routine testing for this, but like all the care today, it got shoved under the carpet. This is such a complex and difficult condition to deal with. It comes at you in all directions, and never gives in and that’s why good control with medication is essential, to live a good quality of life, for as long as possible. It is not a terminal illness. It is treatable.
My a.f. started in 2015. The doctor sent me to A. & E. and l was seen straight away ahead of the que. I was admitted and given injections of heparin and warfarin tablets. I was told when l was discharged to go to my g.p. for a blood test. I was given needles to inject myself at home and a number of wafarin tablets. My g.p . took the needles and most of the wafarin tablets off me saying that l didn't need them . A week later l had a big stroke and was blue lighted to hospital. I eventually recovered , but two and a half years later l went into heart failure. Despite treatment for this and a so called wonder drug , l am still very breathless and fatigued. I was getting blackouts when my heart would pause for 10 seconds at a time. I have since had a pacemaker implanted which cured that and l don't have so many episodes of a.f. l have always had very symptomatic episodes of a.f with a rate of 150 to 250 b.p.m. with a box of frogs in my chest and pain across my shoulders and in my mouth , so obviously l can't do anything in that state. I eat 3 small healthy meals a day; no processed food, no alcohol , no caffeine and no fizzy drinks as advised by the consultant ; so l can't do more to help my self. I am 88 in a few weeks time. I wouldn't be in this state if that stupid g.p. hadn't gone against hospital instructions. Of course l didn't know much about a.f. when l first go it . I have learnt a tremendous amount from the caring people on this forum and my own research. It was a different g.p. that sent me straight to A&E.
I am so sorry to hear what happened to you. This should never have happened. A GP is not specialised in matters of the heart. I think you are very safe with a pacemaker. I won’t hesitate, should l need one. I don’t trust my GP. at all, with my heart. I need a complete check up at the moment, but my GP wouldn’t refer me back to the Cardiologist unless my blood test was abnormal, so l had to go to AE emergency for them to refer me. You seem to be looking after yourself very well, which is key. You are a wonderful age, so happy birthday in a few weeks time. Yes, this is a helpful forum and l wouldn’t be where l am today without this essential help. It is so encouraging to know that we are all in this together and supporting one another. I wish you well and thank you for your replies. Take care.
Thank you, All the best to you x
❤️xxx
I never thought that if you went to A&E you would automatically get referred. It took me a year to get re- referred after the g.p. wasting n.h.s money on tests that l didn't need. Apparently you can't just ringup the cardiac nurse once you have been discharged. I wasn't even told that l had been discharged. They shouldn't discharge you as you are not cured. Then you have to start all over again .... waiting! I eventually saw a cardiac nurse who put me on the new drug. It hasn't worked so she doesn't know what to do with me. She said l shouldn't be getting the symptoms that l have. So l am dischargedback to my g.p. who is useless. How are you doing now.?Has the cardiologist helped you ? I hope so xx
Well, l got referred from this particular hospital. I was referred by Ambulatory Care department. The doctor, l saw, referred me on the computer immediately. I had been to AE quite frequently, at the time, so it was not a one off. Also, on my notes was lack of monitoring and he said there was nothing to compare then and now. In other words, my GP had done nothing in six years, although l had been pretty stable during that time, but AF came back with a vengeance after a gastric endoscopy test. I have just had a ct angiogram and l am waiting for the results of that,
I hope your results are good and it is nothing too serious. G.P.s aren't what they used to be. I don't know what they do all day. They can't diagnose on the telephone and there seems to be no communication between the surgery and the hospital.
Of course it has to be treated. I think we all know that and are all treated, especially for stroke risk, which is life threatening. AF is not classed as a terminal illness. It cannot be cured, but with treatment and monitoring it can be managed successfully and we can live a normal life span. People are known to live in their 90’s with this condition. It depends on the individual and the condition of the heart initially and any other health conditions they may have. Treatment is given to protect the heart which makes AF non life threatening, unless you do something stupid like running a marathon.
Hiya Cavalierrubie,
Your last sentence resonates ............. I have read time and time again both in UK and Australian print media, I have seen it reported in visual media, and I've seen stupid boasts on this forum and its forerunner that refer to people with an AF diagnosis go back to running, cycling even taking on hill challenges, others report collapse and often die running a marathon or olympic grade cyclling .......... both men and women!
If people are carrying the AF diagnosis and they pursue such activities then death becomes a very likely and very grave subject. I personally call it stupid and maybe these people should seek professional help much like a drug addict might do. Clearly they are addicted.
John
I agree with you entirely John. Couldn’t put it better myself. Look at C Dreamer’s post, l think that confirms what you are saying. As with every illness, there are sacrifices to be made in looking after yourself. Common sense and moderation in everything, to give your body a chance to keep healthy. The heart is a strong organ but needs to be treated with respect. I always enjoy reading your posts and replies thank you. I am now going to have a sit in the sunshine and enjoy the day. You do the same. 🌞🌞🌞. Happy days.
Thank you for your reply. I had nothing wrong withmy heart when l went into a.f. Yes l have lived with it from 79 years old to nearly 88 years old and maybe l will live a bit longer but the quality of my life isn't good, even before l went into heart failure. I get very frustrated as l used to lead a very active life. I have brought up 8 children had a menagerie of animals, had numerous hobbies and gone out to work. I took a pride in my home and garden and loved looking after them. The thing is my brain keeps telling me to do things but my body says ....NO. because when l try to do things it makes me feel so faint and breathless. As Bob says the medication etc, that we are given is for q.o.l. but it doesn't seem to work for me. I know l should concentrate on the things l can do like my hand sewing and embroidery but l do miss walking my dogs and gardening and baking and looking after my home myself. I have arthritis in every joint and ruptured discs, 3 hip replacements , one of which was done incorrectly ( to put it mildly) but that didn't stop me planting out half an acre of garden. I can manage severe pain. It is the a.f. and the subsequently the heart failure that has floored me.
You have had a very filled life and so you will miss not being active. Age slows us down as well as AF etc. The medication we have to take has many side effects and that could be some of your problems. Maybe look at reducing some? You could ask, l am not a medic., but l suspect it could be the problem. Sometimes these drugs can make us feel worse than AF itself, l am 76 and l find l am more slower this year than last. Did you have a Covid vaccination? That floored me for a long time so l won’t be having anymore. I wish you well.
I take the least drugs l can, which is an anticoagulant, 2 water tablets and Jardiance which is for diabetes really , although l l haven't got diabetes it was found to be goodfor the heart. Imust say it hasn't made any difference to me. My cardiologist fell out with me because l wouldn't take dijoxin and diltziam which lhad years ago with very bad side effects. He refused me an echocardiogram even though my symptoms are worse and l haven't had one for 3 years. Drugs don't seem to suit me . I stopped all my arthritis drugs and felt so much better in myself. Even the strongest painkillers didn't work on excruciating pain and l could manage just severe pain. The trouble with drugs for the heart , you can't stop taking an anticoagulant or water pills. I did stop my beta blocker thinking it was making me fatigued but l am still very fatigued and every little thing l do takes tremendous effort. As for my new wonder drug, it hasn't made me any better but then , it hasn't made me any worse. I can't think of anything else l can do. I know l am old but l know other people who are as old as me or older who are completely independent, so it must be the a.f or heart failure that is stopping me and the medication isn't working.
Thank you for your reply. I had nothing wrong withmy heart when l went into a.f. Yes l have lived with it from 79 years old to nearly 88 years old and maybe l will live a bit longer but the quality of my life isn't good, even before l went into heart failure. I get very frustrated as l used to lead a very active life. I have brought up 8 children had a menagerie of animals, had numerous hobbies and gone out to work. I took a pride in my home and garden and loved looking after them. The thing is my brain keeps telling me to do things but my body says ....NO. because when l try to do things it makes me feel so faint and breathless. As Bob says the medication etc, that we are given is for q.o.l. but it doesn't seem to work for me. I know l should concentrate on the things l can do like my hand sewing and embroidery but l do miss walking my dogs and gardening and baking and looking after my home myself. I have arthritis in every joint and ruptured discs, 3 hip replacements , one of which was done incorrectly ( to put it mildly) but that didn't stop me planting out half an acre of garden. I can manage severe pain. It is the a.f. and the subsequently the heart failure that has floored me.
When l was diagnosed with AF., six years ago, my Cardiologist, at that time, told me that AF was not life threatening
It's no doubt a well meaning statement designed to put patients at ease, but it's an oversimplification. And like all oversimplifications, there is some truth but a lot left out.
I'm sure at the time you were told this that your afib was not life threatening and in fact in most cases it's technically not. However, studies show -- some recent and some not -- that afib is associated with a higher incidence of stroke, heart failure, dementia. other cardiac events and even mortality. Not to mention a diminished quality of life.
Does this mean you will have heart failure and live a shorter life if you have afib? Certainly not, but depending on your afib burden and how your afib is treated over the years, you may.
So on one hand, yes, it's ok to tell someone who just has been diagnosed that it's not life threatening. But on the other, it's irresponsible to just stop there.
The patient should be made aware that proper treatment including an emphasis on rate control and preferably rhythm control when possible, will mitigate the risks of more serious outcomes.
Not telling the whole story leads to complacency and what I would call 'afib bravado' where people at times seem almost proud of how high high their heart rate goes and how they just go about their business for hours or days without concern. All this can lead to poorer outcomes down the road.
Jim
Totally agree with you Jim , particularly the 'Afib bravado' bit.
As to "afib bravado" I'm more than happy to be an "afib wimp" when my heart rate sores to during an afib episode. I don't continue with my business, but lie down and start taking measures to get my rate and rhythm under control. My ablation a year ago was a success and they found no scarring in the left atrium. I think taking afib seriously over the years played a part.
Jim
Jim, just curious if your ablation was successful, why would you still have afib episodes??
My ablation was 14 months ago and I only had one short episode at month 6 that I was able to terminate with Flecainide. Both my EP and myself consider the ablation the success because my afib burden was reduced significantly. A successful ablation doesn't necessarily mean 100% afib free and in many cases that is not possible.
Jim
Thanks for the information! My mom had ablation about 20yrs ago and unfortunately for her, it was not successful. The cardiologist would not do another one because her heart stopped after the procedure. Glad you had success!
What it boils down to then is the individual, their circumstances and attitude. Personally, l cannot see anyone not taking this seriously and l think this forum advocates sensibility and moderation. I agree, entirely, that the patient should be aware of the importance of treatment to protect the heart and especially in taking an anticoagulant. As with every disease, some are worse off than others. We all know this is a progressive disease and the aim is to halt it as much as possible. The treatments that are available now can possibly make it more truthful for the Cardiologist to say that it is not life threatening? Thank you for your input.
Aa far as I'm concerned AF can be life threatening so don't be complacent. If left untreated for not necessarily a great length of time, heart failure can creep into the equation. This is by no means inevitable, but you ought to be aware of this. Its treatable but shouldn't be ignored.
I've had AF , on and off , for close on 32 years and had a great number of cardioversions and my 5th ablation a few days ago. I had pulmonary oedema as a result of being left in AF in 2009 when I was admitted and treated. This past year my AF episodes (5/6?) started up symptoms of heart failure . I feel its a bit cavalier to make a somewhat sweeping statement such as ' you can't die of it'.
An interesting post Cavalierrubie.
I think the Cardiologist at York Hospital Dr Sanjay Gupta has said that it's the company that AF keeps (other ailments alongside AF) that cause the problem. So AF on it's own is ok unless you have another medical problem too.
As Bob has said if you do strenuous things like running a marathon while in AF, well that's just not a good idea. When I used to have my dreadful attacks I could barely walk from the kitchen to my lounge, let alone run!
Jean
You are absolutely spot on Jeanie and so is Bob. I find Dr. Gupta’ s videos so helpful and reassuring. Never thought to go there, so thanks for that. I am the same with my attacks. I just curl up in a ball.
I would say AF won’t kill you, either immediately or in the long term, if you are sensible and have good care. That is why we say it’s ok to stay at home unless you have chest pain, faintness/dizziness, extreme breathlessness and other symptoms pointing to your heart not being able to keep up or possibly a heart attack. We also encourage anybody in persistent AF over 100 to get urgent treatment. If you insist on running a marathon or shovelling snow while in AF then it’s your own stupidity that killed you, not AF. Comorbities and intolerance to helpful meds play a part too. And sometimes people just can’t bear to give up so keep putting off pace and ablate until their heart has weakened.
Very interesting Buffafly. Some good points there. Thanks. 👍
I'm a bit confused Buffafly, Di you mean that anyone with AF over 100bpm should get urgent help, or that those with persistent AF that have a HR over a hundred should get urgent care?
I wish I could get the italics to work on my iPad! Yes, it’s persistent AF constantly over 100bpm that should be taken seriously. If your rate spikes over 100 that’s natural but if AF runs at say, 120, for weeks on end that is going to cause damage. Just to be clear persistent AF is AF that has lasted for 7 days or more, after that time it seems it is unusual to return to NSR naturally.
Thanks Buff for your replies. I have found them very helpful to me and reassuring. 🥰
I sat down to dinner with the parents of the chap who died from heart attack that Bob mentioned annd it shook me. When I enquired further they told me they had been worried anbout him for some time but he had refused treatment and insisted on continuing to train at a high level ‘pushing through the pain’. It was an extreme example and an attitude that you come across in extreme sports such as Iron Man and elite servicemen who are trained ‘ to ignore pain because training that hard is painful, very.
That aside my understanding is that AF is not immediately life threatening but treatment and monitoring are advised for anyone with either PAF or persistent AF. Getting the monitoring is of course is sometimes another matter in the UK NHS at the moment.
I would also mention that my husband had heart failure in 2018, now reversed after AF has been treated. He was carefully screened for CVD and apart from a few leaky valves is in good order - for 90 - having had AF for some 15 years or so now.
As Buff says, be sensible but don’t overthink it either. At the same time don’t ignore symptoms so if you have chest pain, unreasonable breathlessness at rest, syncope or near syncope you need to go to A&E ASAP or call Paramedics.
Best wishes.
Thank you CD. That’s a very sad story indeed and one to take note of. It’s very encouraging to hear that your husband reversed his diagnosis of HF. He sounds wonderful. Yes, l agree that this has to be treated and monitored because, unfortunately, it can be progressive, as we all know. The heart is a strong organ, but has to be treated with respect. Your replies are always encouraging and full of wisdom thank you.
I guess you can say I was lucky in that I am symptomatic (PAF) and received treatment almost from the word go, circa 18 years, which I am still taking, as well as an anticoagulant a few years later. I can still function to a degree when in Afib but at a much slower speed if I have to move. It’s when I return to NSR that I am wiped out.
I do agree with all the caveats that have been mentioned and also find Dr Sanjay Guptas videos very informative.
hi, I read lots on AF when I was first diagnosed 3 years ago. I understand that the very rapid heart rates and irregular beats can - after a while - be a contributor towards heart failure.
Like many others here we all have different stories to tell. I was diagnosed in 2020 but had been having symptoms long before that - years in fact [40's]just didn't know what it was and it was only few times a year. 2020 it all got worse with hospitalisation/cardioversion and beta blockers [Bisoprolol] this however didn't have the desired effect to was changed on to Sotalol which worked up to a point. Booked in for Ablation 2023 and was asked to stop Sotalol 3 days before procedure. Didn't make the 3 days and was admitted to hospital with HR of 179. Adenosine doesn't work for me and had all 3 doses but after some time reverted back to normal rate. Had ablation next day and it wasn't successful - 10 day stay with overnight one in CCU. Now taking Amiodarone but it's now becoming less effective to and AF is 'breaking through' - I have been told that there are no other options left for me apart from a Pacemaker which I really don't want [I am 67 this year]. I also am at high risk of Atrial Myopathy which I have read is caused by ageing so I am now stuck between a rock and a hard place. Cardiology said I only have to pick up phone and they will arrange Pacemaker for me. I hope you don't find my post worrying but thought I'd be open and honest about my journey with AF. Take care.
I have heard that a pacemaker is ok and that lots of people feel much better. I am sure there are some on here who have taken that route, so will perhaps get in touch with you. All the best.
My wife's cousin had a pacemaker fitted at age 67 and has never looked back. He had become more ill than he thought he was with his AF and was rushed to hospital from the GP surgery where he had gone for a 6 monthly check, and spent a couple of weeks in hospital and had his pacemaker fitted then. He had got to the stage where he couldn't play with his 4 grandchildren but now at 72 he is running around with them and doing everything he thought he would not be able to do again. He was a good athlete when he was younger and still played football in a local league, now he only plays football with his grandchildren. For him a pacemaker was a godsend.
I think it is for a lot of people Desanthony, including Elton John.
I've had my pacemaker for 3 years now. Implanted when I was 70. I'd had AF for 17 years and lived fine with it, even when it became permanent. However, I'd experienced a few random pauses in my heartbeat; one of which lasted too long for comfort...I love the reassurance it gives, and it's constantly monitoring my heart rate, e.g. the cardio team at the hospital had picked up some very high HR episodes even though I hadn't.Please don't turn down the option without lots of thought.
Hi there, and thank you for your reply. I sat with my Cardiologist, whom I trust very much, but when he mentioned the Pacemaker I immediately replied that I thought it was a 'death sentence.' Perhaps an overreaction from myself coupled with the fear of having a mechanism keeping my heart rate as normal as possible. He explained everything in detail including the small ablation several weeks later which I know is irreversible once it is carried out. I suppose my main fear is that point-of-no-return and the risks in getting it implanted. My heart didn't like the ablation so the fear of it rejecting the pacemaker is preying on my mind at present, but I will definitely give it a lot of thought and thank you so much for your re-assuring words.
I read an article from Shanghai about a study that held promise of Berberine instead of Amiodarone. For me this works well. 1500 a day, with 500 each meal. I couldn't stand Amiodarone.
I didn't want a pacemaker but in the end l gave in. It completely stopped ny blackouts caused by my pulse rate going too low and stopping for 10 seconds at a time. Although it hasn't stopped my afib episodes but it has reduced the amount l have.
The Docs know more about your heart than any other random person who have not had their heart examined (ecg etc), the Doc tells you that your condition is not life threatening . I would believe your Doc. There are many conditions that are picked up during the heart examination that are life threatening, the Doc will tell you, thankfully most conditions can be helped with the correct treatment. The main thing is to let your Doc know how you are for him to treat you accordingly, many conditions left untreated will either fix themselves (our bodies are built to be self healing given the right conditions - and time), or worsten and without treatment could be fatal. Many that die from a heart condition would have survived if their Doc had examined them and treated the condition.
From personal experience, I was diagnosed with SVT (non specific diagnosis) 35 years ago, put on drugs (some of which made my condition worst), had an ablation 5 years ago, Doc said it was MAT and Afl that I probably had it all my life. A year following the ablation (took a long time to recover) felt better than I had been for for the last 40 years, now approaching 70 with occassional very mild ectopics and very occassional runs of mild Tachycardia for up to 3 minutes (normaly just around 20 seconds or less) as the Doc said he could not ablate all the MAT.
My advise is to ensure you lead a healthy lifestyle, plenty of water and not too much caffine or sugar, regular mild exercise such as walking or doing lots around the house is also really beneficial. Over exertion is not good so no marathons.
Thank you. Good advice.
If you are medicated for your AF - ie on anticoagulants and, if necessary rate/rhythm control then from what I understand AF alone is not life threatening. See Bob's reply.
I was told similar and it was that which, like you, allowed me to cope with the illness. The upstairs two rooms of the heart, I was told, can be in chaos yet will have little important effect on long term health or on the downstairs rooms, maybe speeding them both up, but not immediately damaging them. I was told it was tachycardia that needed to be controlled as this can, when untreated and prolonged, lead to valvular weakening and ventricular wall thickening, and even to heart failure.
My understanding since then is that in some people, AF is the result of other diseases, some of which can be more serious. Hence in some, a fast AF attack can cause respiratory difficulties that need emergency treatment; and in others, their AF is part of other and longer term structural issues with the heart muscle or the valves which can be worsened by the AF.
In general, though, my understanding is that AF feels much worse than it really is. It can, however, be debilitating, bring feelings of being out of breath and bringing exercise intolerance in its wake.
One of the problems with looking at studies on the prognosis of AF is that the patient base under study will always be so very diverse that drawing conclusions is, as a result, made more difficult. It will also always be an aging patient base (unless the trial design is selective), and ageing populations have multiple co-morbidities making the role arrhythmia plays in their health and demise hard to tease out from the overall effects of their other illnesses.
Steve
Thank you Steve for that informative post. You are correct, as l don’t expect the Cardiologist would have said that to me if there had been other problems with the heart. Yes, the stigma of old age is relevant in the prognosis, l am sure, as are other diseases that affect overall health. This is such a complex condition because of the individuality of it. As many have said, to keep monitored and, treated accordingly, is key to maintaining the best quality of life.
Keeping monitored is something our NHS systems has lost its power to do, I feel, at times. I suspect “uncomplicated” AF will likely be left to the repeat prescription only. Mind you, at least having anticoagulant treatment forces a full blood test biannually which is a good thing.
Steve
Yes, survival of the fittest. I have noticed this decline in the past couple of years, having had to go to A/ E. l have just been referred to an AF clinic at our local hospital. The wait is 17 weeks. The correspondence stated that if l feel unwell in the meantime, to contact 111. Not a lot we can do, only have a good grumble!
Indeed. Let’s hope things start to improve soon. I don’t hold out that much hope!
Steve
Thanks for an excellent question, @Cavalierrubie I've enjoyed reading through all the comments, very helpful. It is something I've wondered too. I'm here on behalf of my 75 year-old mum who has had both SVT (ablated) and latterly, AF (medicated). I've have been confused about whether it falls into the 'category' of heart disease or not, which the prevailing argument would say not. Perhaps that's irrelevant though, given the answer to such a question is layered and complex. As with most things!
Thank for your reply. I am not a medic, but l would think that any medical condition of the heart would automatically come under the category of “heart disease.” Certainly AF. Best wishes to your lovely mum.
Well, I can only tell you from my experience. My AF has caused atrial enlargement, which in turn has stretched the annulus around my mitral valve so now I'm on a waiting list for valve repair/replacement surgery.It's not the AF that can necessarily be life threatening but it's the things it can cause that may be.
Yes, you have a good point there thanks. My neighbour had a valve replacement many years ago and she is fine. Goes by, walking her small dog. It is really remarkable what can be done for us now by these wonderful heart surgeons. All the best.
Hi. I would echo some of what has been said already. AF itself is not life threatening BUT, there is a stroke risk with AF, hence the anticoagulants AND as I have learned more recently from personal experience it can cause heart failure if left uncontrolled for long periods. This was a shock to me as I had refused to let AF rule my life. I had also ended up with poor liaison between the cardiac centers involved in my care so ended up with heart failure at a young age. I am hopeful that now that the AF is controlled some function will return.
Long answer I know but the take home message is as long as there is good rate control along with anticoagulants AF is unlikely to kill you.
I hope your HF will be reversed now you are being treated. It is possible, as CDreamer has told us in her reply. Her husband has cracked it! so that is very encouraging for you. Take care and every good wish for your future health.
How often were your afib attacks and how long did they last?
I too was told by the cardiologist that it wasn’t life threatening.
They can’t all be wrong can they?
I live in hope they are not. I have PAF and can go a couple of weeks or less before my heart does the stupid business. It just happens I don’t always know why. It can last for a day and overnight and other times a few hours. I try to ignore it and carry on, in the past I have done aerobics with it racing but not anymore. It annoys me at times and I get mad with my heart calling it names lol doesn’t help though 😆. Stupidly or not I keep telling myself it’s not going to kill me. 😊
Yes, it is something we have to learn to live with, The unpredictability of it, along with the unreliability of it, is what gets me down at times, so have to remind myself that it could be something worse, or never caught at all and then the risk of having a stroke …,.,,,,,,,,, It does make us have our moments of despair. Take care.
You take care too. 😊
I have lived with AFB for over 7 now and it’s so normal for me
crossing the road can be life threatening….lots people saying AFIB all ok unless it leads to HF ..which will get you! Lots of people with HF on here may have other thoughts ….que sera sera
Hi
Step one: your notebook should contain your personal levels of heart rate and BP. Then any changes, when for how long.
Step two: Symptoms
Step three: control of heart rate and BP
An ECHO. ECG and 24-hr monitor should be taken. It will report the state of your heart when you are the current med for BP or H/Rate.
It's about you feel.
On the meds.
Controlling your AF during the episodes.
I never rung St Johns but I guess I should have because H/Rate 186bpm at rest is abnormal.
1 year 3 months later demanding a heart specialist I was changed to Bisoprolol having taken ECHO, ECG and 24-hr h/monitor.
then after the Bisoprolol another 24hr Heart monitor which showed 156 Day at rest.
Through all this my night heart rate avg was 47bpm and I had lost the pauses Metoprolol gave me.
But left at 156bpm day.
Sent to private H/Specialist. Once introduced to CCB Ditiazem 120mg best for me I was controlled at last. 60s H/Rate Day and didn't interfere with low 47bpm Night avg.
Damage can be done if you remain in an abnormal state.
A friend carried on but he took 5 different meds. Young they finally checked him for ablation. They found 2 electrical areas bad and ablated these both. Lucky him he has no more AF in 2 years. He had the catheter ablation.
Everyone is different. My heart is structurally abnormal so no cardioversion, no ablation and no anti-arrhymnic meds.
Diltiazem is acting as an anti-arrhymnic med by slowing dow h/beat.
I take Bisoprolol 2.5mg for BP control.
No-one should put up with prolonged episodes of uncomfort.
It is a matter of weighing up though. Emergency is vital via 111 if necessary.
Women have a good intuition use it. Pain is certainly an emergency call.
It is not wise to cast your opinions over others. You are saying "don't be a baby' or similar. Let them make up their own mind of the severity of their symptoms.
cheri JOY. 75. (NZ)
AF is not life threatening immediately. But in time it will destroy your health. My view is: every engine has its resource. If you like it or don't, every heart has its resource. When it beats too speedy it wears off the mentioned resource. When it beats irregular - heart muscle, blood circulation, nervous and breathing systems are suffering and working under pressure. Not to mention a number of sleepless nights spent in attempts to deal with playing havoc AF
I think it is pretty much clear AF wears out your health resource, shortening your life, taking away your freedom etc
There has to be an acceptance that old age can also cause the deterioration you speak of, when the human body begins to wear out and multiple ailments rear their ugly head. Unfortunately, old age is beyond our control. The key here is monitoring and treating AF to obtain the best quality of life for as long as possible. It is not classed as a terminal disease. It cannot be cured, but it is treatable in its entity.
Did I write anything about old age? AF is not age related. Over 100/200 HR on a regular basis is able to destroy any heart in any age. Did you even understand what I wrote about engine resource? Doesn't matter how old is an engine. Some hearts are ticking perfectly until 100years old without AF. Some are running out of resources much earlier DUE to AF burden
Hiya. I've been told the same thing; contradictory information is very confusing. Will be interested to see what responses you get. Good luck.
Yes, it needs clarifying. Had some good replies and points of view. Lots of things to take into consideration, as it’s such a complex thing and individual differences contribute to it being so, but on the whole, it seems that the outlook is an optimistic one, to me anyway. Thanks.
I wonder how many people are reading this and getting triggered. I was told don't worry here's meds take them and we will be in touch soon, a month later I had a HA. I didn't even know I had one till a week later I had a panic attack and called an ambulance, my markers where up, then I had a mental health breakdown with the shock. The cardio nurses to this day still scratch their head and say why I had a HA is still a mystery, as apart from my AF there is nothing else wrong.
I had a HA caused by coronary artery spasm, no clot involved. It was very shocking because I don’t have CVD so couldn’t understand how I could be having a heart attack. Apparently it’s a much under diagnosed condition.
I think the question is if AF is life shortening rather than life threatening. My online research seems to be that like many of the responses it depends on other life factors such as diet, exercise, medication, etc. From what I was able to find online it appears that all things considered AF will shorten like span from 3 to 8 years. I have had 3 ablations, 7 cardioversions, and currently take dofetilide to control my AF. I have been on dofetilide for about a year and it has been generally successful with many fewer episodes. I have also been diagnosed with hypertrophic cardiomyopathy.
That’s a good question. I would have thought, again, that it’s an individual thing and whether there are any comorbities. Lifestyle, monitoring, and treatments are paramount in having a good quality of life, for as long as possible. I have heard of people having it in their 90’s, so it’s not all doom and gloom. Genetics probably play their part as well. Pleased that you have managed to keep your AF under control. That’s good. Thanks for your reply. Best wishes to you and keep well.
My heart doctor told me it was not life threatening! I suppose there might be some other reasons for it not to be, have not looked into it !
I don’t think a doctor would be allowed to state that fact, if it wasn’t true, do you? I have heard of people living in their 90’s with AF so that is encouraging for everyone. Keep well.
Good morning Cavalierrubie
Thank you for your post on the Atrial Fibrillation support forum.
Although AF is not considered a life-threatening condition, it can cause inconvenience to many due to its unpredictable approach. There is no known permanent cure for AF as it stands alone, so it is important to understand how to manage symptoms and understand what treatment options are available to help on an individual basis.
Please follow the link below to download 'AF and You' if you have any questions please contact us.
heartrhythmalliance.org/afa...
api.heartrhythmalliance.org...
Kind regards
SamAdmin
Booklet
Thank you Sam.
First off, apologies for the long post. I know people find long posts boring but I think sometimes it's needed to reflect a balanced response.Second off I really appreciate this site and the admin folk who take care of it so I don't want to sound critical. But, I would like to push back on the use of the word inconvenience. This might fit for some and, of course, that's fine if that's their experience. It won't be for others though.For me I hear this as somewhat dismissive and minimising of the impact of AF.
I think it speaks to the tension that exists around the condition. A kind of divide between those who view it as a minor nuisance and those who view it as life changing. If its your personal experience (like expressed on this forum) then that's obviously up to each individual. But when medics (and those sharing medical information via leaflets etc) express their views as a kind of certainty then their view has consequences for their patients.
My first cardiologist, when I was 29, expressed the "minor nuisance" view of AF. He told me to get on with life, make no adjustments for it and told me that I was no more likely to have serious heart problems than anyone else.
After having allergic reactions to one of the meds, I was discharged without medication. I was told I wasn't a candidate for ablation either. Come back if it worsens considerably was the message. Despite seeing GPs about my heart subsequently, I was never referred back and I never took myself to A and E as I was "getting on with it" and it became background noise. I never really tracked my condition but I think I was in persistent AF for about a decade, at pretty high rates, and managed that with breathing techniques and getting on with life. It wasn't something I worried about but it did impact.
When I found myself back under a cardiologist a few years back, when that approach was no longer working, things had taken a turn for the worse, I was then in very high rate AF and MRI result suggested heart failure. This was in my late 40s despite having led a pretty healthy lifestyle. It was pretty shocking.
3 ablations and many drugs later, I'm doing much better, thanks to a cardiologist who took a more proactive approach. I'm now out of the heart failure category, in terms of ejection fraction, thankfully. And no medication. Obviously the years of uncontrolled AF has taken its toll though.
I'm definitely not one to be alarmist and I think often the most appropriate approach is to be encouraging and reassuring to folk who might be new to AF and anxious about that. And who's to say if the "get on with it message" was right or wrong. I lived 20 years without AF running my life. But there were also consequences to that.
So, I think we need to be cautious about being as assured as my first cardiologist that AF is just an inconvenience. There's usually more to a story than the headline.
Thanks for listening.
Hi, lets be honest, cardiologists and people on this site say AFC won't kill you, well thats just semantics. With AF you are more likely to have a stroke, heart attack and heart problems you would not have had if you did not have AF. So on a death certificate it will say heart attack. So live your life as best you can we all have to die sometime just hope its quick and painless.
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