Why stay in permanent Afib?

The husband of a friend of mine has Afib and after several years of paroxysmal Afib (he had maybe 3 episodes), he went into permanent Afib. His cardiologist and he made the decision for him to stay in it. I haven't talked to him personally about it.

Won't that cause heart failure? I'm guessing he's taking a rate control drug, but still, his heart is not beating properly, not circulating blood efficiently, and this can't be good. I know when I had my episode, testing showed elevated troponine levels which they attributed to the stress of the Afib.

There has to be more to the story. Why not cardioversion or ablation? Perhaps he has some pre-existing condition that offers him no alternatives.

I'd get at least another opinion. The first Cardiologist i went to also suggested that staying in AF was an option for me. He even gave me a nocebo - cardioversion would not work

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Catherine
There has to be more to the story. Why not cardioversion or ablation? Perhaps he has some pre-existing condition that offers him no alternatives.

I honestly haven't even talked with him about it. I did talk to his wife, but I didn't question her. The next time I talk to her I think I will .

But, I was just wondering why someone would make that choice and, if so, doesn't it damage your heart over the long run?

"Won't that cause heart failure? I'm guessing he's taking a rate control drug, but still, his heart is not beating properly, not circulating blood efficiently, and this can't be good. "

I am not advocating staying in AFIB, but it should not cause Heart Failure if rate-controlled. It depends on the person, but Cardiac Output is only slightly reduced for some people.

Many people live perfectly healthy, happy lives with persistent afib for decades. As long as there's adequate rate control, afib does not lead to heart failure or much of anything else, and if there's also appropriate anticoagulation, the stroke risk is reduced to near normal. The choice not to attempt to stop afib is a perfectly valid one and it's usually chosen only by people who are asymptomatic. There are a lot of people out there like that. They're in afib 24/7 but they feel no symptoms, they can exercise as usual, it has no effect on their quality of life, and they're well protected by two simple drugs. They live with it and go on with life. They pay no attention to afib so we don't see them on forums like this much.

If you felt no symptoms and had no risks from the afib, why would you undergo an ablation that could possibly create problems you didn't have? Cardioversions are only a temporary stopgap measure that cures nothing. Antiarrhythmic drugs are full of side effects and just not very safe. So what would you gain from trying to intervene if afib caused you no problems in your life? The answer is you would gain nothing and risk much.

That's the reasoning your friend's husband probably went through and the conclusion he arrived at. There are many others like him and it's a perfectly valid choice.

I have a colleague at work that I eat lunch with every other week or so, he is 60. He mentioned one time that he was on an anticoagulant. I usually don't pry but since I had AFIB I ask why he was on it. He said he was in permanent AFIB and has been for the last 5 years. I asked why he didn't want to try to get out of it or have an ablation. He said he barley feels it (only a little before bed) and has no trouble exercising. He asked me why he should get 'zapped' or get holes burned into his heart.

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Carey
Many people live perfectly healthy, happy lives with persistent afib for decades. As long as there's adequate rate control, afib does not lead to heart failure or much of anything else, and if there's also appropriate anticoagulation, the stroke risk is reduced to near normal. The choice not to attempt to stop afib is a perfectly valid one and it's usually chosen only by people who are asymptomatic. There are a lot of people out there like that. They're in afib 24/7 but they feel no symptoms, they can exercise as usual, it has no effect on their quality of life, and they're well protected by two simple drugs. They live with it and go on with life. They pay no attention to afib so we don't see them on forums like this much.

If you felt no symptoms and had no risks from the afib, why would you undergo an ablation that could possibly create problems you didn't have? Cardioversions are only a temporary stopgap measure that cures nothing. Antiarrhythmic drugs are full of side effects and just not very safe. So what would you gain from trying to intervene if afib caused you no problems in your life? The answer is you would gain nothing and risk much.

That's the reasoning your friend's husband probably went through and the conclusion he arrived at. There are many others like him and it's a perfectly valid choice.

I understand the rate control aspect, but isn't the atria quivering a problem? It's not functioning correctly and doesn't that affect circulation, etc.?

When I had my Afib episode, after a little while, I was short of breath and lightheaded (that's when I headed to the ER). Was the rate causing that?

Thanks for your answer - it helped in other ways besides my initial question.

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MikeN
I have a colleague at work that I eat lunch with every other week or so, he is 60. He mentioned one time that he was on an anticoagulant. I usually don't pry but since I had AFIB I ask why he was on it. He said he was in permanent AFIB and has been for the last 5 years. I asked why he didn't want to try to get out of it or have an ablation. He said he barley feels it (only a little before bed) and has no trouble exercising. He asked me why he should get 'zapped' or get holes burned into his heart.

I was telling my friend's father about my Afib and he told me he had an irregular heartbeat for the last 30 years

I think it is quite clear there is afib and there is AFIB so if you have afib and you don't do any heavy undue exercise then maybe living with it could well be possible especially if you take the necessary drugs. However I always consider the mechanical side of AF and if the heart is misfiring and contorting itself unnaturally then long term it could well do damage to mitral valves or whatever. It would appear the four chambers of the heart and associated valves are supposed to work in sync with each other whereas in AF they are not. A senior and regular poster to this Forum, Mr Wil Shumann used to say something along these lines..... Your death certificate will never indicate death by Atrial Fibrillation but no doubt if indicated as Heart Failure AF will have been one of the main underlying reasons. Sounded on the mark to me at the time.

Barry G.

There is a caveat to staying in so-called ‘asymptomatic’ persistent AFIB and that is an increased risk for silent cerebral ischemia and possible increased risk of early onset dementia as noted by a growing body of research worldwide on the topic over the last 10 + years. Please refer to issues #131 and #135 for more insights about the origins and potential outcome of Silent Cerebral Ischemia (SCI) from poorly addressed on-going frequent to constant AFIB over time, and the subsequent possible risks of such initially silent (asymptomatic) and very small brain infarcts from ongoing not addressed AFIB that may accumulate over time. You will find these two issues in the archives section of The AFIB Report newsletters that has been on extended sabbatical the past three and a half years.

It is not at all uncommon for such long term persistent afibbers deemed ‘asymptomatic’ and managed medically to gradually disappear from their regular follow-up charts after the early years when they were parked on a rate controlled drug and any follow up might last from roughly 10 to 15 minutes tops, such that these folks very often gradually stopped coming back to their Cardio/EPs at all and often shifted such ‘easy to manage’ routine care for persistent AFIB to a PCP doctor for convenience.

The excellent research team in Utah first discovered this ‘missing link’ between medically managed on-going AFIB and possible early onset dementia and Alzheimer’s some years ago, courtesy of their very homogenous and very large patient cohort they have followed for decades made up of an overall consistent group of patients. One of their top EPs there first stumbled on this SCI-AFIB-Dementia connection when one of his medically-managed patients who had frequent bouts of PAF, during which he went in and out of AFIB frequently, was in the office one day for his routine follow-up exam. The EP noticed an odd fact that when the man would flip into AFIB, even though he did not feel the AFIB, the man started having noticeable sudden onset dysphasia (speech difficulties) and other signs of cognitive dysfunction. As soon as the man converted back to NSR while sitting in the exam room, he reverted right back to normal speech and clear thinking!

The man was unaware that this major change was even happening to him and his family had written it off as just occasional ‘senior moments’ of aging though he was well under 70 yrs old, which is the official age below which any increased signs of cognitive impairment are classified as “early onset” dementia and/or Alzheimer’s.

From this one serendipitous discovery, the EP researchers at Intermountain Medical Center in Utah started examining more closely this huge ideal cohort of such homogeneous patients looking for all those who had AFIB and with a connection to early dementia. They were alarmed by the large numbers of folks initially being treated for AFIB and not infrequently with other cardiac issues, who gradually stopped coming for follow up over time and thus were not showing up in their typical research studies.

No one noticed the trend until they did the study, but once alerted to this possible connection a surprising number of their patients had been sidetracked from follow up cardio treatment and/or had died before 70 either from Alzheimer’s or dementia establishing this strongly suggestive link to ongoing AFIB.

More long term study’s on this very important issue are underway now to help further validate and confirm these findings on a larger scale across Europe (for example at Dr. Thomas Deneke’s cardiac MRI group in Germany, Dr Gaite’s group (spelling?) in Italy and at a number of large centers in the US. Including, of note, St Davids Medical Center in Austin which Dr Natale has made one of the key focus points of their largest AFIB research center in the world. Over the last 7 to 10 years a tremendous amount has been learned about these risks over and while we still need larger randomized studies for full confirmation, Inhavent heard one of the EPs who have been involved the most in this research who have many doubts at all that this is a significant problem indeed. Time should give us all more insights, but my sense that afibber who chow to ignore thiscreach may well do so at their own peril.

It’s certainly true that many people manage to live with on-going AFIB reasonably well. Liz and her mom are just two examples, though in my conversations with her it’s. near she and her mom were able to manage a less severe manifestation of AFIB than many of our readers have experienced. It’s quite possible some of their good fortune has been a combination of good genes and good diet as Liz as recounted many times.

In short, this research and discovery offers one of the most compelling reasons, in my view and that of a large number of highly respected EPs, as to why not to just procrastinate living with ongoing AFIB that is still very active even if not noticed by the person. Especially when there are better ways now to eliminate AFIB from one’s life ranging from LIfe style risk reduction (when this proves highly effective long term for some), and most successfully for the largest numbers in our experience, via completion of an expert ablation process when it becomes clear to a given Afibber that they are not going to be able to successfully eliminate AFIB from their life by these alternative means alone.

This conundrum also reflects one of the limitations, too, of older observational research that seemed to imply it is no problem to just cruise with AFIB if you do choose so long as you don’t seem to notice it. Many people who initially claim to be asymptomatic turn out to actually experience a significant amount of active AFIB symptoms or signs that they simply were unaware were coming from
their heart rhythm disturbance until their S.O.B. or serious fatigue was connected to their AFIB.

In some cases, this research was not catching the significant numbers of Afibbers who simply fell off the roles of patients being properly followed up with as the dementia slowly swallowed the attention of the Afibber and families alike. And often the patient simply died of dementia and this were no longer were part of any ongoing AFIB list. That is what really surprised the Intermountain EPs, just how significant this all is.

Shannon



Edited 2 time(s). Last edit at 07/30/2019 06:06PM by Shannon.

I would not want to be in persistent afib for decades. Asymptomatic and risk-free are relative terms. Afib symptoms are confounded by BMI and co-morbidity. Afib stroke risk is uncertain even with anticoagulation for such long periods. Also, if the disease and/or symptoms progress, one is potentially faced with a more problematic ablation.

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katesshadow
I understand the rate control aspect, but isn't the atria quivering a problem? It's not functioning correctly and doesn't that affect circulation, etc.?

When I had my Afib episode, after a little while, I was short of breath and lightheaded (that's when I headed to the ER). Was the rate causing that?

When you're in afib you do lose the so-called "atrial kick," which means you might lose up to 15% of your normal cardiac output, but for most people who are asymptomatic that's not even noticeable. I know a guy who's 71 and has been in persistent afib for years. He runs in the senior Olympics and frequently wins. In fact, his afib was discovered by accident during a routine exam. Even without rate control he had no idea he was in afib. He says his afib simply doesn't affect him in any way, and for that reason he has no intention of seeking an ablation, cardioversion, or anything else. He takes a beta blocker and Pradaxa and that's it.

It's a bit of a mystery why some people are symptomatic and some aren't, but sometimes people go undiagnosed for years precisely because they're asymptomatic. They don't feel it and it just doesn't affect them, so nobody ever investigates. Sometimes those people suffer devastating strokes because of it. As an EMT I encountered one or two of these people. They would call 911 for stroke symptoms, and when I felt their pulse it was irregular, so I put them on a monitor and there it was. I'd ask if they knew they had afib and they would say no. It's amazing how many people go years or even decades without seeing a doctor who does a thorough exam, or even just feel their own pulse now and then.

It might seem like that should be the case, but it just isn't. People with rate controlled afib and anticoagulation live just as long as anyone else, including people who treat their afib. It might seem like it should do harm, but it's well established that it doesn't.

I concur with Carey, many people can live well a long time in persistent afib, assuming adequate rate control & anticoagulation.

I did have an EP suggest it to me about 4 months into my afib "career" 15 years ago. It was then that I proposed my "Plan B" that he accepted and I've been following successfully since. As a very active person, it was not an attractive solution for me.

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Carey

I understand the rate control aspect, but isn't the atria quivering a problem? It's not functioning correctly and doesn't that affect circulation, etc.?

When I had my Afib episode, after a little while, I was short of breath and lightheaded (that's when I headed to the ER). Was the rate causing that?

When you're in afib you do lose the so-called "atrial kick," which means you might lose up to 15% of your normal cardiac output, but for most people who are asymptomatic that's not even noticeable. I know a guy who's 71 and has been in persistent afib for years. He runs in the senior Olympics and frequently wins. In fact, his afib was discovered by accident during a routine exam. Even without rate control he had no idea he was in afib. He says his afib simply doesn't affect him in any way, and for that reason he has no intention of seeking an ablation, cardioversion, or anything else. He takes a beta blocker and Pradaxa and that's it.

It's a bit of a mystery why some people are symptomatic and some aren't, but sometimes people go undiagnosed for years precisely because they're asymptomatic. They don't feel it and it just doesn't affect them, so nobody ever investigates. Sometimes those people suffer devastating strokes because of it. As an EMT I encountered one or two of these people. They would call 911 for stroke symptoms, and when I felt their pulse it was irregular, so I put them on a monitor and there it was. I'd ask if they knew they had afib and they would say no. It's amazing how many people go years or even decades without seeing a doctor who does a thorough exam, or even just feel their own pulse now and then.

I did not know I was in Afib. I just thought it was palpitations, but every once in awhile, I would tell my husband that it didn't feel right. Part of the breathlessness, etc. could be attributed to being anxious about it.

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Carey


Cardioversions are only a temporary stopgap measure that cures nothing.

Was worth doing in my case because i didn't like the bad symptoms and the CV lasted 18/20 months.

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Joe
Was worth doing in my case because i didn't like the bad symptoms and the CV lasted 18/20 months.

Oh, I never said it wasn't worth doing. Cardioversion definitely has its place and I almost always think it's worth trying. I've had more than a few myself. I just meant it won't cure anything. I've always envied people like you who got relief for many months or years from a single zap. You're rare, but it sure goes to show cardioversion is worth trying at least once.

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Carey
People with rate controlled afib and anticoagulation live just as long as anyone else, including people who treat their afib. It might seem like it should do harm, but it's well established that it doesn't.

Carey, I certainly take and respect your point of view as per your quote and I too have known of a few folks who've lived to be 90 having had permanent AF for 30+ years, but do you 100% stick with your viewpoint as quoted even in the face of the points Shannon makes above re dementia?

I don't know how I missed your post earlier, but I did. Very interesting. My sister has early onset dementia and how it came about is a mystery. We have a vary large family and, as far as I know, she is the first one diagnosed with dementia over the last few generations.

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mwcf
Carey, I certainly take and respect your point of view as per your quote and I too have known of a few folks who've lived to be 90 having had permanent AF for 30+ years, but do you 100% stick with your viewpoint as quoted even in the face of the points Shannon makes above re dementia?

I do, with some reservations. The data quoted by Shannon is certainly interesting, but it's not conclusive and no one has established a causal link between well controlled afib and dementia. There are a great many confounding factors, and to my knowledge no one has conducted a study designed to control for those factors. For example, it's also well known that long-term compliance with anticoagulants is dismally low in the general population. Patients tend to take them irregularly, and eventually dwindle off and stop taking them entirely. So if you don't know how compliant someone has been over the years, you don't know how much of the observed dementia was in fact due to poor compliance. Micro clots being thrown by people with afib who aren't anticoagulated could very well explain the results observed.

My mother is likely a good example of this. She was in persistent afib for years with inadequate care from a non-cardiologist who prescribed aspirin for her instead of warfarin. It was only after several years of inadequate anticoagulation that she got proper care from a cardiologist and began warfarin. She died of Alzheimer's in 2016, and I think it's likely all those years of aspirin are to blame. That's not something anyone could prove or disprove, but it's my strong suspicion. My older sister lived with persistent afib for even longer than my mother, but she was an RN and was religiously compliant with her meds. She remained mentally sharp until her death due to unrelated causes.

Personally, I think the important message is if you're going to live with afib, you need to be religiously compliant with both anticoagulation and rate control.



Edited 1 time(s). Last edit at 08/01/2019 12:49AM by Carey.

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Carey

Carey, I certainly take and respect your point of view as per your quote and I too have known of a few folks who've lived to be 90 having had permanent AF for 30+ years, but do you 100% stick with your viewpoint as quoted even in the face of the points Shannon makes above re dementia?

I do, with some reservations. The data quoted by Shannon is certainly interesting, but it's not conclusive and no one has established a causal link between well controlled afib and dementia. There are a great many confounding factors, and to my knowledge no one has conducted a study designed to control for those factors. For example, it's also well known that long-term compliance with anticoagulants is dismally low in the general population. Patients tend to take them irregularly, and eventually dwindle off and stop taking them entirely. So if you don't know how compliant someone has been over the years, you don't know how much of the observed dementia was in fact due to poor compliance. Micro clots being thrown by people with afib who aren't anticoagulated could very well explain the results observed.

My mother is likely a good example of this. She was in persistent afib for years with inadequate care from a non-cardiologist who prescribed aspirin for her instead of warfarin. It was only after several years of inadequate anticoagulation that she got proper care from a cardiologist and began warfarin. She died of Alzheimer's in 2016, and I think it's likely all those years of aspirin are to blame. That's not something anyone could prove or disprove, but it's my strong suspicion. My older sister lived with persistent afib for even longer than my mother, but she was an RN and was religiously compliant with her meds. She remained mentally sharp until her death due to unrelated caused.

Personally, I think the important message is if you're going to live with afib, you need to be religiously compliant with both anticoagulation and rate control.

Many thanks for your response Carey.

This paper speculates about the why <[www.innovationsincrm.com]

One of the issues is that afib in the elderly tends to keep company with a lot of metabolic dysfunction. Hence there could be an association and there also could be causality. I concur with Carey to be religious with your meds, but I'd also suggest getting rid of as many metabolic issues as possible.

My mom was is permanent afib the last 12 years, I made sure she was anti-coagulated thru a whole array of medical procedures and recently passed with her mind still sharp at 90. She spent the last 3 months in home hospice recalling childhood memories and giving her friends advise on their problems. I'm grateful she never stroked out and was my confidant on our estate till the end.

McHale

Shannon, Carey,
I'm a new arrival in the land of afib at age 66 and I'm particularly interested in your thoughts about remaining in persistent asymptomatic afib for the long term.

A month ago I went to the hospital for a routine colonoscopy but when they hooked me to monitor they saw I was in atrial flutter, totally new for me. I was admitted and put on Eliquis and cardazem. After 3 days of persistent flutter, had ablation, which appeared to "fix" it. I was in sinus rhythm for 5 days. But then I got a call from my primary (who is a cardiologist, and who was very surprised to see this happening, given all the testing over the years, including June checkup), who is getting data from my new loop recorder. I had gone into afib, and I have been in persistent afib ever since - about 3 weeks. No sign yet of sinus rhythm. And I remain asymptomatic, can't really feel a thing. Doctors say my heart is otherwise in good shape: cardiac arteries in good shape, etc.

Primary doc amped up the diltiazem to 3 a day after a week of afib. I'm having a hard time holding out much hope that I'll get back to normal rhythm without an ablation for afib (very different procedure than for flutter). I've got the Apple Watch with the ECG app but it reports no good news.

My EP, Bruce Goldner, who is very highly regarded at Long Island Jewish in Queens NY, only gives a 50-50 chance that afib ablation will get me back to sinus rhythm.

And from what I'm reading, it would be advisable to stay at least on the anticoagulant for the long term, even if I'm back in sinus rhythm and regular beat (my beat is very irregular at this point). Book by Dr. Warrick Bishop, "Atrial Fibrillation Explained," states that afib patients who get back to sinus rhythm still appear subject to strokes and other negative outcomes at a similar rate to those who remain in persistent afib.

But then there's the evidence Shannon cites about SCI and dementia risk.

I'm signed up for ablation in late December, but I am not sure whether it will make much difference in the long run.

And of course there's the 50% chance that it won't work. Do I then go for another, and another?

Of course I'm looking for changes I can make that will "correct" my rhythm without ablation. I've stopped drinking caffeinated coffee and alcohol and I'm trying to increase water intake. I'm looking at pushing my current keto diet towards Mediterranean by adding some whole grains and more fish (replacing meat). EP says primary factor for me was weight; I spent last couple decades at BMI of 33 to 35. I'm down almost 30 lb since June on keto diet, and I want to stay close to that and lose another 30 or so. Could losing the weight help bring me back to normal rhythm?

Neither of my doctors seem to think keto diet is causative. Low magnesium can be an issue with keto but they didn't see that in my labs. They're happy I'm taking off weight.

As a persistent, there don't seem many clear paths to discovery of triggers - since I don't seem to be having episodes. I'm really wishing there were more potent levers I could yank on.

Should I be looking at amalgam in my teeth?

If I have sleep apnia, will wearing one of those awful masks at night pull me out of afib? Hard to imagine.

What about acupuncture? I have heard that acupuncture can be used to change heart rhythm. Anything to that?

I am astonished at the level of mystery that comes with this condition! Leaves us all open to the whole spectrum of crazy ideas about what might help. And stupid book titles like "how to beat afib" as if there were a "cure." Looks to me like we can mitigate risks, and episodic affibbers may be able to control triggers -- but we're all in this for the duration.