by Carolyn Thomas ♥ @HeartSisters
If you or somebody you care about has been diagnosed with Atrial Fibrillation (AF), you likely already know this about the diagnosis: it’s an irregular heart rhythm affecting the heart’s upper chambers (the right and left atria) – and it’s also the most common heart-related reason for hospital admission. As Kentucky cardiologist Dr. John Mandrola likes to describe the disorder:
“AF is both a disease and a consequence of actions. It’s your body talking to you.”
Dr. John is a bike racer and one of my favourite writers in cardiology. As my heart sister Jaynie Martz once sized up his writing: “concise, charming, compassionately light, adult-to-adult, uber-digestible with nary a whiff of condescension or pomposity.” Amen, Jaynie. His particular cardiac specialty is electrophysiology, the diagnosis and treatment of heart rhythm disorders. Here’s his overall take on the diagnosis of atrial fibrillation, as delivered to a Utah conference of his fellow electrophysiologists recently:
1. AF is a growing and major health problem – and it afflicts a diverse patient population.
2. Though things continue to improve, we offer imperfect treatments.
3. Nearly all approaches to patients with AF are preference–sensitive. No patient really “needs” to have an ablation or take an anticoagulant drug.
4. Information and effective communication in the doctor-patient relationship is everything.
And here’s a more specific list, from his blog:
13 things to know about Atrial Fibrillation
“Here are 13 things I tell AF patients.
- I am sorry that you have AF. Welcome to the club, there are many members. (Three million Americans and counting.)
- I know how it feels.
- Your fatigue, shortness of breath and uneasiness in the chest are most likely related to your AF.
- AF may pass without treatment. Really.
- Important new work suggests AF is modifiable with lifestyle measures. As in, you can help yourself.
- AF isn’t immediately life-threatening, though it feels so.
- Worrying about AF is like worrying about getting gray hair and wrinkles. Plus, excessive worry makes AF more likely to occur.
- Emergency rooms treat all AF in the same way. One hammer — often a big one.
- There is no “cure” for AF. (See #5)
- The treatment of AF can be worse than the disease.
- The worst (and most non-reversible) thing that can happen with AF is a stroke. For AF patients with more than one of these conditions: Age> 75, high blood pressure, diabetes, heart failure, or previous stroke, the only means of lowering stroke risk is to take an anticoagulant drug. Sorry about the skin bruises; a stroke is worse. Know your CHADS-VASc score.
- The treasure of AF ablation includes eliminating AF episodes without taking medicines. But AF ablation is not like squishing a blockage or doing a stress test. It will be hard on you. It works 60-80% of the time, has to be repeated one-third of the time and has a list of very serious complications. UPDATE: Read Dr. John’s essay on ablation (March 11, 2017).
- If your AF heart rate is not excessive, it’s unlikely that you will develop heart failure. Likewise, if you have none of the five risks for stroke, or you take anti-coagulant drugs, AF is unlikely to cause a stroke. In these cases, you don’t have to take an AF-rhythm drug(s) or have an ablation. You can live with AF. You might not be as good as you were, but you will continue to be.
“There’s obviously more than 13 things to say about AF. It’s a complicated disease with many different ways to the same end. We need adequate time with our patients to give them this kind of powerful knowledge. They need time to digest all the possible treatments, or perhaps no treatment. Patients need to weigh the disease against the treatments.
“All this is why AF treatment should not be rushed.”
And here’s what patients love to see, which is empathy of the highest order: Dr. John’s own description of being diagnosed with the same condition that he treats every day in others (from his Utah presentation):
“On a hot summer bike ride in 2010, my heart rate monitor started producing quirky data. About that same time, power left my legs, I gasped for air, sweated profusely and felt faint. When I got home – hours later – it was clear that an AF doctor was in AF.
“This year-long experience with AF taught me a lot – not the least of which was that it is one thing to prescribe a therapy such as Flecainide – it is yet another to swallow that white pill yourself.”
- UPDATE – December 2016: Dr. John Mandrola’s new book The Haywire Heart is out! Recommended for anybody who competes in endurance sports (running, cycling, triathlon, cross-country skiing) and who needs to know that going too hard or too long can damage your heart forever.
- Heart palpitations – what do they mean?
- A rock drummer’s take on Atrial Fibrillation
- Coping with your partner’s ICD and heart disease
- Why are women with atrial fibrillation treated differently?
Q: What’s been your experience with Atrial Fibrillation?
33 thoughts on “Dr. John Mandrola: “AFib is your body talking to you””
Great article. I was diagnosed 7 years ago after a long hike- said I was dehydrated. It used to come back once every two years or less. Then last year I had an episode every month and now it seems a few times a week. I am on Dilitizam 180 extended release and sometimes take 2 a day but it still breaks through and I usually go to work or carry the
I was born with dextrocardia (a rare heart condition in which your heart points toward the right side of your chest instead of the left side) and situs inversus (a congenital condition in which the major organs are reversed or mirrored from their normal positions) so the most frustrating thing for me is even when I have a well visit with my cardiologist or when I have to go to the ER for an unrelated reason there is always confusion regarding leads and when I tell the technician, it still ends up my being put in some ICU or telemetry fast track until the attending cardiologist can see the tests.
Okay so I am awake and able to speak but what if one of these days I can’t and I end up being treated for a supposed heart condition I don’t have. Last time they put me in the ER and when I had a chance to be seen by the cardiologist attending and told him the triage nurse insisted on placing the leads on the way she ‘always does’ he had her fired- he said this could have caused your demise. I am scared to even go to the ER now. I just wish I knew why my afib is increasing. Am I doing it to me?
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Hello Anjela – my first thought on reading your words was this: “SHE NEEDS TO BE WEARING A MEDICAL I.D. BRACELET!!” If you don’t have one already (you should!) you must order one immediately. Your current diagnoses should be engraved on whatever style of ID you choose.
As you quite correctly say, when you’re awake and able to speak, you can communicate with ER staff – but what happens if for any reason (could be that you just trip and fall and knock yourself unconscious!) you cannot speak, your medical I.D. can speak for you. Please read this and then start looking up which type of medical I.D. you plan to order…
I’m not a physician, so of course can’t comment specifically on your diagnostis. You didn’t mention if your AFib is being treated by an electrophysiologist (a cardiologist with specialized training in heart arrhythmias), but the answers to many of your questions may lie in the hands of such a specialist if one is available in your area.
Also, if you haven’t already, please visit Dr. John Mandrola’s website, an excellent source of credible information about AFib. It’s a goldmine for all AFib patients… Best of luck to you…
Currently living with an 81 year old with diabetes and high blood pressure who is no longer on anticoagulants as a result of a fall in April. A few Afib 5 min intervals have occurred in the last couple of weeks. He is a candidate approved for the Watchman device. Is this procedure worth it? As per your article it’s not a cure for ischemic strokes and contains peri-procedural complications.
Any advice would be greatly appreciated in helping make this decision to have the procedure or continue to stay on baby aspirin.
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Hello Dana – This is a dilemma for so many in this situation. I’m not a physician so cannot tell you if the Watchman is “worth it” or not, but I can point you to Dr. John Mandrola’s respected take in his Medscape column on this subject (November 2017) ” Seven Reasons New Data on Watchman Are Not Persuasive“.
Sorry to disagree but a fib is curable in lone afib. By adhering to proper lifestyle and with “proper use” of anti ahrythmial drugs like flec and amio but only short term. Most important in lifestyle is understanding how to use excersise properly as a tool. I am “proof in the puding”. After 5 ablations, 15 cardioversions and 15 plus corses of amio and or flec with load up as much as 7000 mg I finally cured myself. Swimming, gym,500 skips of rope and more. Im in excellent condotion at 68.
How did that miracle cure happen? It would be valuable to many persistent Afib patients?
I’ve just had a 48 hour heart tape on. And the results were my heart rate dropped to 34 bpm when sleeping. And peaked at 208 when out cycling. I’ve been told by a doctor that it’s Atrial Fibrillation. He also said that he can’t prescribe medication as my heart is already too low. I’m thinking about paying to see a specialist as my doctor doesn’t seem interested in taking it any further.
Hello Wallace – I’m not a physician so cannot comment on what your specific situation, but I can say generally that if my doctor didn’t seem interested in following up on an atrial fibrillation diagnosis, like you, I might want to make an appointment with a heart rhythm specialist known as an electrophysiologist (or EP) to follow up. Meanwhile, as Dr. John Mandrola says (who like you also has atrial fibrillation and is a cyclist): “You CAN live with AF!” Re-read his 13 Things to Know About A-Fib list (above). Best of luck to you…
I am scheduled for a cystoscopy procedure in four days and I take Xarelto every day for Afib. My Cardiologist/EP first said I didn’t need to stop the Xarelto for the procedure, then said I could stop it for a couple of days; the Urologist said I didn’t need to stop the blood thinner. I have Afib episodes quite a lot these days although BP and heart rate do not go high. Am really at a loss as to what to do about the medication.
Hello Cantrell, I’m not a physician but I can tell you generally that some procedures (e.g. open heart bypass surgery) and some patients (e.g. those with prosthetic heart valves) are considered at high-risk for bleeding. Cystoscopy is a relatively quick diagnostic procedure (about five minutes under a local anaesthetic and maybe 15-30 minutes under a general). There may be a risk of bleeding, which is likely why your EP is saying it’s okay to temporarily stop the Xarelto. Your doctors are balancing your risk of developing a clot (by stopping Xarelto) vs the risk of bleeding (by continuing). The Xarelto product website says that because this drug has a shorter half-life compared to older anticoagulants, this makes it easier to discontinue safely and resume rapidly for medical procedures. Talk to your EP one more time before your procedure as he/she (and colleagues) will likely have the most current info to base your own decision on. Best of luck to you…
Thank you Carolyn for your quick and helpful reply. I did get in touch with my Cardiologist today and both Cardiologist and Urologist said to continue taking the Xarelto for the procedure.
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Great! Don’t you love it when both specialists agree?! Good luck to you…
My husband had been diagosed with Afib about 6 years ago. We are in a quandary about whether he should be taking blood thinners or not. We have become very healthy eaters – vegan – and he is controlling all his risk factors through diet and exercise. We find most allopathic doctors are pushing the blood thinners. Our research informs us that the newest blood thinner such as Pradaxa impacts the immune system (though Dr. John says almost no side effects?) this is a huge concern as my husband had been on another one previously and it interacted with another medication and greatly depressed his immune system. Has anyone any experience or thoughts on this matter? Eliza
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Hello Eliza – sometimes the reason that doctors “push” a specific treatment plan is because lots of studies have shown what can happen when that treatment plan is ignored. As Dr. John (who coincidentally was diagnosed himself with AFib a few years ago) wrote just yesterday in his column called “2017 Update on the Changing Use of Blood Thinners for AF” (in which he points out that the name blood thinners is actually not an accurate description of the medications known as anticoagulants). For example, he writes:
“When you take a clot-blocking drug, you are making a gamble. You take the drug because numerous studies show that they reduce the probability of a future stroke. That’s good. But the drugs also increase the odds of having a bleed. That’s bad…
“Doctors like this trade in most cases, because strokes are worse than bleeds. I tell patients that strokes can cause permanent disability–or said another way, strokes can steal part of what makes us human. Things like thinking, speech, movement, swallowing, etc. Bleeds, on the other hand, are scary and dangerous, but most patients leave the hospital with their human functions intact.”
Every patient ultimately makes his/her own decisions about whether to take certain drugs or not. If your husband believes that being a vegan who exercises will prevent him from having a life-destroying stroke, go for it. Personally, I’ve met too many vegans, triathletes and others who also believed themselves to be invincible – until they weren’t. Best of luck to you and your hubby…
Thank you for your speedy response – much appreciated. Our concern is not mainly just the possible bleeding that can happen though that is very worrisome. It is rather about the affect of Pradaxa on the immune system. According to recent research, the immune system is dependent on clotting to work properly; this leaves one susceptible to all kinds of viruses and other infections. My husband was on Xarelto before which interacted with tamulosin and affected his immune system badly. He got pneumonia and then found out he had a small amount of colon cancer which was removed. We sure don’t want anything this dire to happen again. That is our main worry. If one researches immune system affects of Pradaxa one can see what I am talking about. I read Dr. John’s discussion on the new blood thinners but he seemed to dismiss the side effects as being nothing when our own research says differently on the Pradaxa. Any thoughts would be much appreciated.
Hello again – I’m not a physician so cannot comment specifically on your husband’s situation, but I can say generally that drug-drug interactions can indeed be a serious problem for some people. A close friend of mine almost died because of a very rare drug toxicity reaction between two very commonly prescribed medications that in most people cause absolutely no problems at all. I really can’t advise you one way or the other here on such an important issue.
Afib makes me crazy..I have had it since I was 30 now I’m 50..it comes and goes ..it makes me extremely tired. It gives me anxiety.
Hello Michael – Living with Afib for 20 years can indeed be exhausting. You can read more about Afib in Dr. Mandrola’s blog.
I’m 81 years old, taking verapamil and digoxin for afib (which regulates it fairly well). But 2 weeks ago I started taking 40mg of prevastatin . . . and for the past few days, my afib has increased in intensity and frequency. The only change in my life has been taking the statin. I want to stop taking the statin. Any scientific evidence of a connection?
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I’m not a physician so cannot comment specifically on your statin question, but I can tell you generally that if this is the only change to a diagnosis of otherwise well-controlled atrial fibrillation, you need to contact your physician right away to report your new symptoms. Some studies have suggested that statins may actually decrease episodes of afib.
But any woman of your age should read cardiologist Dr. John Mandrola’s take on the subject of statins in older patients. Best of luck to you…
Thanks so much, Carolyn, for your prompt response. I think I’ll go for the diet and exercise routine for lowering cholesterol (mine is high normal) and inflammation. I’m already a no-meat fish eater and it will be fairly easy to increase the healthy foods (and eliminate sugar, sweets, and the bad white foods). I do need, though, to increase exercise. (I do wish doctors would push lifestyle changes before prescribing drugs.)
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Especially for 81-year old women! Yours sounds like a plan, Judith. Many doctors, like Dr. John himself, do indeed push lifestyle changes. He has a great quote for all heart patients that I often repeat:
“You only have to exercise on the days you plan to eat!”
My husband has been suffering with Afib since 2014 after cataract surgery. Hospitalized 3 times in 2014 and not since we read and applied, supplements and advise from Dr. Sherry Rogers.. Seriously we must forgive her for the title of her book. We also did a Genova Cardio Ion test which was somewhat enlightening however we do not have an cardiologist Integrative enough to monitor both the nutritional and the allopatic (conventional) cardio care.
BTW Allopathic medicine is an expression commonly used by homeopaths and proponents of other forms of alternative medicine to refer to mainstream medical use of pharmacologically active agents or physical interventions to treat or suppress symptoms or pathophysiologic processes of diseases or conditions.
As usual I digress. We believe that the best help has come from increasing my husbands RBC Magnesium level ( (RBC) Magnesium is special test for cellular not just serum level) by his taking 600 to 800 mg of different forms of magnesium. He is still lower than we would like but he is pretty much at bowel tolerance for the forms we are currently trying (there are about 9 different forms of magnesium) Magnesium is greatly lacking in soil today so most all folks are low in it– Magnesium helps regulate heart rhythm. Lots of other considerations because the human body is fearfully and wonderfully made (Psalm 139). It is working 24/7 to keep us a float. I personally believe that lifestyle, environment and nutrition are mainly responsible for advancing or declining health. Nutritional medicine is the the future for true health care.
BTW I am not a health care practitioner but have learned a lot for what we have suffered. I believe that patients need to be responsible for their own health.
We are in search of an Integrative cardiologist.
“People are fed by the food industry, which pays no attention to health, and are treated by the health industry, which pays no attention to food.” ― Wendell Berry
Hi Martha – it sounds like you and your hubby are satisfied with his current magnesium treatments (although being at maximum “bowel tolerance” brings on its own special set of concerns for the human body). I agree that overall lifestyle improvements are important in maintaining/improving heart rhythm health, but I’m not at all convinced that the entirely unregulated dietary supplement industry is the magic solution to all arrhythmias as is so often claimed by proponents. And I see that you also sell these products yourself, so I have removed the link to your marketing website.
Worse, I simply cannot take seriously any “expert” like Rogers whose books deliberately boast offensively inflammatory click-bait titles like “Is Your Cardiologist Killing You?” – all the better to get featured on the front covers of reputable science journals like The National Enquirer or The Daily Mail. When you consider that the New York State Board for Professional Medical Conduct actually charged Rogers with eight specifications of professional misconduct including one charge of “gross incompetence”, I have to ask if this is the person you should be quoting, putting your faith in, or even admitting you follow?
Personally, I’ll take a real Afib physician (and patient) like Dr. John Mandrola any day…
Best of luck to you and your husband.
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Carolyn Thomas Have you read the book Is your Cardiologists Killing you? by Dr. Sherrie Rogers …I did not like the title either!
The adage is that you cannot judge a book by it’s cover.. The Bible teaches that even God judge the heart and says that man looks at the outward.
Martha, I don’t read the Bible but I do read the New York State Board for Professional Medical Conduct findings and their ruling on Rogers’ eight charges of professional misconduct including one charge of gross incompetence. That’s all the book review I need…
Please Carolyn Thomas I am not promoting Dr. Rogers and I have never ever sold any supplement or health products. I am only looking for help for my husband. I am still looking and found my own post tonight and noticed I could clarify my intention. I would love for my husband to get help from Dr. John Mandrola.
Martha, you certainly are promoting Dr. Rogers. And you may not be currently selling supplements/health products, but when you first wrote to me, I had to delete the link you had included to your personal website marketing such products, just as my disclaimer page indicates I do for anybody attempting to make money off my blog readers.
So next time you spam other health-related blogs, don’t include your commercial URL and then try to claim that you “have never ever sold any supplement or health products”.
Supplements are not “entirely unregulated” by the FDA: https://www.fda.gov/Food/DietarySupplements/
It’s lobby-driven gobbledygook. This is not “regulation” in the same way that any food or drug is even minimally regulated. This says that “manufacturers and distributors of dietary supplements and dietary ingredients are prohibited from marketing products that are adulterated or misbranded.” In fact, the FDA even says right here that the companies themselves are “responsible for evaluating the safety and labeling of their products before marketing”. What kind of “regulation” is that?
So as long as they don’t kill you and don’t lie on the label (like using the word “cure”), they’re okay…
Dr John, I’m so glad to find a fellow cyclist with AFib experience.
I have both atrial flutter and AFib and was recently ablated for flutter (zapped the isthmus) and began meds and thinner for AFib. No recurrence yet!
I’m 67 years old and daily cyclist, 20 miles per day (ish). Not competitive, just exercise and weight control. Previously a runner but age and joint concerns drew me to the bike.
Would appreciate your insight for a semi-serious cyclist of my age regarding moderate daily cycling; 20 miles per day at moderate pace (15 mpg).
BTW, I’m planning a 20 day bike tour next Spring with a 60 MPD average speed. Texas to Mt Rushmore. Good or bad idea?
Regards, and cycle on!
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Thanks very much for the introduction to Dr. John. I long to move back to Kentucky in order to have a doctor with such careful thinking. And perhaps one who takes the time to know the patient.
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Hello Marilyn – it shouldn’t be necessary to move to Kentucky if only more physicians were on the same page with Dr. John!