Doctors & patients are saying about 'A-Fib.com'...


"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."

Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN

"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."

Jill and Steve Douglas, East Troy, WI 

“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP. 

Faye Spencer, Boise, ID, April 2017

“I think your site has helped a lot of patients.”

Dr. Hugh G. Calkins, MD  Johns Hopkins,
Baltimore, MD


Doctors & patients are saying about 'Beat Your A-Fib'...


"If I had [your book] 10 years ago, it would have saved me 8 years of hell.”

Roy Salmon, Patient, A-Fib Free,
Adelaide, Australia

"This book is incredibly complete and easy-to-understand for anybody. I certainly recommend it for patients who want to know more about atrial fibrillation than what they will learn from doctors...."

Pierre Jaïs, M.D. Professor of Cardiology, Haut-Lévêque Hospital, Bordeaux, France

"Dear Steve, I saw a patient this morning with your book [in hand] and highlights throughout. She loves it and finds it very useful to help her in dealing with atrial fibrillation."

Dr. Wilber Su,
Cavanaugh Heart Center, 
Phoenix, AZ

"...masterful. You managed to combine an encyclopedic compilation of information with the simplicity of presentation that enhances the delivery of the information to the reader. This is not an easy thing to do, but you have been very, very successful at it."

Ira David Levin, heart patient, 
Rome, Italy

"Within the pages of Beat Your A-Fib, Dr. Steve Ryan, PhD, provides a comprehensive guide for persons seeking to find a cure for their Atrial Fibrillation."

Walter Kerwin, MD, Cedars-Sinai Medical Center, Los Angeles, CA


Coping with Atrial Fibrillation

Calling All A-Fib Patients: Participate in On-Line Research Survey on Anxiety and A-Fib

Many of us know how debilitating the emotional component of A-Fib can be and the impact on our quality of life. We often say that Atrial Fibrillation wreaks havoc with our heads as well as with our hearts.

This is what doctoral student Sevinc E. Uzumcu is investigating—the anxiety and depression often associated with Atrial Fibrillation. She has asked all our A-Fib.com readers to help with her research.

This survey is part of her doctoral applied research project at A.T. Still University’s Arizona School of Health Sciences. She is seeking all A-Fib patients to answer her online questionnaire whether or not suffering with anxiety or depression.

This aspect of Atrial Fibrillation is seldom investigated.

Give Just 7 Minutes for A-Fib Research

We strongly encourage all A-Fib patients to take this online survey. I answered the questions, and it only takes about 7 minutes. Your responses are anonymous.

To participate, go to the survey “Invitation”.

Submissions will be accepted through September 30, 2018. As part of her doctoral studies, she hopes to publish the results of her research.

A-Fib Doctors Need to Treat the Emotional Effects

The A-Fib patient community really needs this research study and needs to share the findings with doctors treating A-Fib patients. Raising doctors’ awareness of the psychological aspects may encourage them to develop treatment protocols.

Kudos to doctoral student Sevinc E. Uzumcu for undertaking this research.

(In all my years of attending A-Fib conferences, I’ve never seen doctors discuss this topic. But I did! As a patient advocate, I talked on this topic to 200 cardiologists in Zurich, Switzerland at MAM 2016.)

For dealing with the anxiety associated with A-Fib, see my article: Coping With A-Fib Anxiety and the PODCAST: 15 Ways to Manage the Fear & Anxiety of Atrial Fibrillation.

The Survey Title:The Association Between Atrial Fibrillation and Anxiety

Click here to go the survey Invitation (link is at the bottom of the page).

A-Fib Not only Affects You But Also Your Loved Ones

Diagnosed at age 54, Tony Hall was very physically active, primarily a runner. He was helped by the book, Beat Your A-Fib, and decided to enlist Steve Ryan as his A-Fib Coach. In his A-Fib story, Tony shares:

“On one of our conference calls with me and my wife, Steve asked, “So, Jill, how are you doing?”
That was a light bulb moment for me.
I consider myself to be a very supportive husband in many ways; but until Steve asked that question of Jill, it really did not occur to me how dealing with A-Fib affects the lives of those close to us.”

A-Fib not only impacts the patient’s health and quality of life but also the lives (and often livelihood) of their loved ones and co-workers.

“Top 10 Questions Families Ask about Atrial Fibrillation”

Download the Free report

A-Fib can be a life altering disease―yet people with A-Fib don’t look sick.

When a patient is diagnosed with Atrial Fibrillation, family members often struggle to understand what their loved one is going through.

Selected from our many Frequently Asked Questions (FAQs), these are the most asked questions (with our answers) from family members. Read more and download the 5-page PDF report, ‘Top 10 Questions Families Ask about Atrial Fibrillation’.

Free Reports, Worksheets and Downloads

As a service to Atrial Fibrillation patients, we offer FREE downloads of our own worksheets and reports. We have also collected useful FREE services or downloads from others serving the atrial fibrillation community.

Why not take a few minutes to browse our page with Free Reports, Worksheets and Downloads?

PODCAST 2: What Do You REALLY Pay to Continue Living with Atrial Fibrillation?

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Note: If you prefer to read instead of listening, click the transcript graphic bar below for the printed version.

The REAL Cost of Living with Atrial Fibrillation 

What does A-Fib REALLY cost you? To you physically? To your Quality of Life (QoL)? And to your pocketbook? That’s the topic of this podcast between Steve and our friend, Travis Van Slooten, publisher of LivingWithAtrialFibrillation.com. (About 28 min. in length.)

Here are the highlights of our conversation:

There are two costs of living with atrial fibrillation: financial and quality of life costs. Both are very high!

Financial Costs

 A-Fib costs the United States about 6 billion each year.
 Medical costs for people who have A-Fib are about $8,705 higher per year than for people who do not have A-Fib.
 There are 750,000 hospitalizations each year because of A-Fib.

Quality of Life Costs

 Atrial fibrillation is a progressive disease that tends to get worse over time.
 Frequent A-Fib episodes enlarge and weaken your heart and can lead to other heart problems, including heart failure and other cardiovascular problems.
 Ongoing A-Fib can remodel your heart (change how your heart works), produce fibrosis (fiber-like, immobile tissue) or permanently scar your heart.
 You’re losing 15% to 30% of your normal pumping ability of your heart when you’re in A-Fib.
 Frequent or prolonged episodes of atrial fibrillation tend to stretch and dilate your left atrium. In the extreme, you lose all contracting ability and function of your left atrium.
 If you leave someone in A-Fib, the A-Fib attacks tend to become longer and more frequent.
 One study showed that half the people who managed their A-Fib with rate control drugs went into long-standing persistent A-Fib within a year. (CB de Vos, 2010)
 A-Fib is strongly linked with developing dementia (because you’re not getting enough blood to your brain and to the rest of your body).
 The aim should be to stop an A-Fib episode NOT just control an episode (i.e. slow the heart rate while in A-Fib).
 Today’s anti-arrhythmic drugs only work about 40% of the time, have bad side-effects or don’t work at all. If they do work, they often lose their effectiveness over time.
 Patients with persistent or long-standing persistent A-Fib: If you have been told there is no treatment besides taking drugs to manage your A-Fib, DON’T BUY IT! You have options!
 The Castle AF Trial reveals ablations on heart failure patients with paroxysmal or persistent atrial fibrillation resulted in a 47% reduction in death rates. In the catheter ablation group, 60% improved their ejection fraction by more than 35%! And after 5 years, 60% of the ablation group were in normal sinus rhythm compared to 22% receiving normal drug therapy.
 The goal for every A-Fib patient should be to end their A-Fib and not just manage or tolerate it!

Resources mentioned in this episode

 Atrial Fibrillation Fact Sheet from the CDC
♥ Editorial: Leaving the Patient in A-Fib—No! No! No!
♥ de Vos CB, et all. Progression from paroxysmal to persistent atrial fibrillation clinical correlates and prognosis. (J Am Coll Cardiol. 2010)
♥ 2018 AF Symposium: Findings from the CASTLE-AF Clinical Trial
♥ Catheter Ablation for Atrial Fibrillation with Heart Failure (N Engl J Med 2018)


Travis Van Slooten was diagnosed with atrial fibrillation on Father’s Day in 2006. He would battle a-fib for nine years before having a successful catheter ablation in March 2015. He’s been a-fib-free since with no drugs! His blog covers his own journey and provides information, inspiration, and support for others with A-Fib. Visit his site.

Transcript: The REAL Cost of Living with Atrial Fibrillation

Travis Van Slooten: I invited Dr. Steve Ryan back again for today’s episode of the afib podcast. Steve is a former patient who was cured of his back in April 1998 via catheter ablation. He is the publisher of one of the most popular websites, A-Fib.com and he is the author of the best-selling book, Beat Your A-Fib: The Essential Guide to Finding Your Cure.

So in this episode Steve and I discussed a topic that we are both extremely passionate about. And that topic being “The Real Cost of Living with Atrial Fibrillation,” and why it’s imperative to seek a cure for your afib, rather than just living with your afib. The financial and quality of life cost of living with afib are absolutely staggering. And so in this episode we discussed those costs, and again we really emphasize why it’s so important to find a cure and not just settle with a life of afib. So with that, let’s roll the tape.

All right, Steve, our topic today is really near and dear to my heart – no pun intended – and I know it’s very near and dear to you as well. And I know when I’ve spoken with you in the past you and I are both very passionate about this topic, and it’s the topic of the real cost of living with atrial fibrillation. And of course, when we talked about the cost of living with afib — well, first of all, I should say when we say we’re living with afib, for most people that means they’re just tolerating it, they’re basically managing it as best as they can instead of trying to seek a cure. But the cost of doing that of just kind of tolerating your a favor rather than trying to see a cure, there are really two big cost there. There is the financial cost, but probably just as important, if not more important, is a health or quality of life cost.

Dr. Steve Ryan: Absolutely, yes.

Travis Van Slooten: Yeah, absolutely. So let’s talk about the financial costs, Steve. You found some interesting stats on the CDC website. Can you talk about these financial costs?

Dr. Steve Ryan: Yes, Travis. The CDC has some very interesting figures. Afib costs the United States about 6 billion each year. Medical costs for people who have afib are about $8,000 – and I’m reading from the CDC statement here – are about $8,705 higher per year than per people who do not have afib. Now who has $8,700 to throw around every year trying to cope with the…

Travis Van Slooten: Yeah, and unfortunately with the health care plans that are out there today a lot of people that won’t even meet their deductibles, so that usually probably out-of-pocket cost. Yeah, that’s on fortunate.

Dr. Steve Ryan: Yeah, it’s medication, it’s doctor visits, it’s ambulance, it’s trips to the ER it’s you know, all kinds of stuff goes into that that run up the bills cost. The CDC says there are 750,000 hospitalizations each year because of afib, and afib contributes to an estimated 130,000 deaths each year. The death rate from afib has a primary or a contributing cause of death as been rising for more than two decades. Now that’s because the more and more people are getting afib because it’s a condition of aging, but those are really staggering figures.

Travis Van Slooten: Yeah, tell me about it. And I can attest to those because until I seek my cure which was an ablation, those figures are actually pretty accurate. I mean I remember specifically one year I spent easily $8,000. My trip to the ER was $4,000 alone. Because it was my first episode and I was in an ambulance so the ambulance ride alone was like $1,500. I mean it was crazy, but the financial costs are unbelievable.

But what’s even scarier than the financial cost – and those are scary – is again the health and quality of life cost. And Steve this is where you and I really are passionate about this because I get — I cannot tell you Steve how many emails I get from people saying, “Well, my doctor says it’s no big deal, take these beta-blockers or take these rate control drugs, you know. It’s no big deal. We don’t need to fix it.” And a lot of times they’ll come to me and say, “Is that true?” Or I’ll get people that will say, “You know, my afib is really not that bad. When I have my episodes I’m a little winded but it’s no big deal, do I really need to think about having an ablation?” And I just want to cringe because it’s just like, ugh…

Dr. Steve Ryan: Same here.

Travis Van Slooten: You know it’s just like… So, Steve let’s talk about this. What are the health and quality of life issues that go into “living with afib“?

Dr. Steve Ryan: Well, it seems you and Travis, we both have had afib and we know how wonderful it feels to go from afib to normal sinus rhythm, and to feel wonderful, your body is alive again, you can do everything that you used to do. And leaving people in afib just makes no sense. Let’s say, I mean afib is a disease, it’s a progressive disease that tends to get worse over time and wreck your life and wreck your heart.

Let’s say someone had, God forbid, pancreatic cancer and the doctor told them, “Well, we’re just going to leave you in pancreatic cancer. We’re going to give you a few meds just to keep the pain away.” You look at that doctor and say, “You’re out of your mind.” Why leave someone’s heart in a disease state where you know they’re going to get worse and maybe eventually die from it? It makes no sense at all to me.

Travis Van Slooten: And I think part of the reason for this is with afib, you know, for some people when they have their episodes they don’t feel that bad, especially with people with silent or asymptomatic afib where they don’t really feel the episodes. But even if they have bad episodes, you know, for a lot of people they have an 8-hour, 10-hour episode that goes away and they’re good for another month, but I think what happens is they fail to realize the long-term picture here of what happens to your heart if it’s left in afib. So let’s talk about that. I think that’s the crux of the issue here is that people think “We’ll hey, it’s not that bad now,” but what they don’t realize is if you keep your heart in that states, as you talked about, down the road the end game is it could ultimately lead to heart failure. That’s the issue, right?

Dr. Steve Ryan: Yes, and many other things. Leaving people in afib is a death sentence. There’s all kinds of that document that. Here’s what afib does to you. Let’s say you give them the example of someone who has maybe a 10-hour episode once or twice a month. Having episodes like that enlarges and weakens your heart, and it leads to other heart problems and heart failure and cardiovascular problems. Afib, because it is a progressive disease it remodels your heart. I mean when we talk remodeling we’re saying your heart is changing permanently because of afib.

Now afib produces what is called fibrosis. Now fibrosis is if you look inside a heart you’d say smooth — in a normal heart you’d seem normal smooth heart tissue. It looks very healthy and red and everything is proper. When the heart becomes fibrotic, that smooth heart tissue turns into fibrous tissue. It turns it to basically dead tissue. There’s no transport function, there is no nerve going through, there’s no contraction. It’s dead. It’s like having dead tissue in your heart. And that’s what afib produces. And unfortunately, even though many of the remodeling effects of afib can be corrected by a catheter ablation, fibrosis is usually irreversible.

Now the other thing that afib does because when your heart is functioning normally, the atria, the upper part of your heart squeezes down, squeezes blood down into your ventricles and the ventricles and sends the blood to the lungs.

In afib instead of that squeezing down, that pumping down blood…if you look in your heart your heart is fibrillating, it’s vibrating it’s quivering, it’s not pumping properly. I mean, you’re losing 15 to 30% of your normal pumping ability of your heart. And this action tends to stretch and dilate your left atrium. If it goes too far you lose contractual ability of your left atrium to function at all.

And obviously if you leave someone in afib, the afib attacks tend to become longer and more frequent. There’s been a study where they followed people who developed afib for a year and they were just on rate control meds to control the heart from beating too fast, but leave them in afib, almost half within a year went into a chronic all-the-time afib (long standing persistent atrial fibrillation). Yeah, so the odds are really — I guess a lot of people don’t…I mean, how many people stay in paroxysmal occasional afib for years but the odds are against them.

Travis Van Slooten: I was one of those. I went 8 years, and then it was the 8th year where it spiraled out of control and became a weekly thing, and at that point I put the brakes on that and I had my ablation.

Dr. Steve Ryan: Yeah, good for you. And some of the other things that afib does is because you’re not getting enough blood to your brain to the rest of your body, people tend to develop dementia.

I’ve heard people describe being in afib like they’re in a brain fog. You know, they go to work and they can function. Things they used to do, no problem, all of a sudden they can’t even remember what they’re doing or how to do it. Or they used to speak a foreign language now they can’t anymore because they’re in afib.

One doctor gave at a conference gave an amazing example. His patient would be talking to him normally like a normal patient, he would go into afib and he could no longer talk. That’s the kind of thing that happens with afib. It just has really bad effects over time, and to leave people in afib like that is a death sentence – all too often.

Travis Van Slooten: And so what do you tell the person that again, they go to the doctor they have paroxysmal afib, which is just occasional episodes here and there that end on their own. They go to their doctor, they’re newly diagnosed — let’s say they’re, I don’t know, let’s say they’re 50 years old they’ve had one episode and so they go in the diagnosed “Yep, yep paroxysmal afib,” and the doctor typically in this scenario is going to say, “You’re fine for now. Here’s are some beta blockers,” or maybe “here’s a pill-in-the-pocket or whatever.” So that person will come to me or probably to you too Steve and I’m sure they’ll say, ‘Do I really need to be thinking about an ablation already at this point?” I mean, how do you handle that? What do you typically advise them to do?

Dr. Steve Ryan: Well the example you gave — in other words, if they’re taking flecainide as a pill-in-the-pocket they’re doing something, they’re trying to stop the afib, and they’re trying to stay in sinus with them. That’s good. I mean it may not be the best strategy but it may be something that will work for them for a while. But just the bad thing is to let people stay in afib and just give them a rate control beta blocker to keep their heart from beating too fast. That is what will kill somebody. But if they’re taking chemicals for drugs that will stop their afib, or if they have an attack will stop that attack, that’s good; it’s not the ideal but certainly they’re doing something to keep themselves out of afib, and that’s a good thing.

Travis Van Slooten: So the message here – and this is where I wanted to get to and I’m glad that we’re going there – is the message we’re sending here is — because I know it’s semantics, but if you were diagnosed with afib you have afib but then there are the actual episodes. To my mind they are two different things like I have afib but I’m not always in afib, I don’t always have episodes, at least for some people. So for the person that, okay, they’ve been diagnosed with afib but they’re not, they don’t have episodes all the time, in other words, they’re paroxysmal, the course of action may be fine to just stick with the drugs, but the key should be you’re taking those drugs, as you mention Steve, to get out of afib but not just stay in afib and make it tolerable.

Dr. Steve Ryan: Right, and of course we must say that anti-arrhythmic drugs are very imperfect, there’s no magic pill that anyone can take that will cure them of atrial fibrillation so they never have to worry about it again. The problem with today’s anti-arrhythmic drugs is that they don’t work or if they do work for a time they lose their effectiveness eventually, or they have bad side effects that they get impossible to take them. And they’ve done a number of studies where they have compared catheter ablation to taking anti-rhythmic drugs, and catheter ablation is much more healthy. It’s, you know, all the bad things that can come from staying like a lifetime on anti rhythmic drugs versus a catheter ablation where you’re cured of afib and you don’t have to worry about it anymore, there’s no comparison.

Travis Van Slooten: Yeah, absolutely. And then certainly for someone then that has persistent afib which means your episode is a week or longer or you have long-standing persistent afib, certainly those people should not accept the diagnosis that they should just live with their afib and here’s some drugs to make it more tolerable. Those are the people we especially are saying look, there is a cure or a potential cure out there for you and it’s probably going to be an ablation or a surgical procedure, but by all means you do not have to live with afib.

Dr. Steve Ryan: Right. Now in the example you gave we should tell patients that someone who has been in persistent afib for a while is not going to be as easy as someone who just developed afib. They may have to go to a master EP and they have to go through two ablations; one to get the main spot and second for a touch-up ablation, but it’s still a lot better than living with afib. And they should realize that if you have persistent afib you do not have to live in a fib. There is a cure out there. It may not be the easiest thing to do, or you may have to research and find the best EP doctor you can find, but there is light at the end of the afib tunnel. You don’t have to live for the rest of your life in afib.

Travis Van Slooten: And I think that’s such an important message because I get so many emails from people that are in persistent afib and they tell me you know my doctor says I’m not a candidate for an ablation because I’ve been in persistent afib for 2 years and they don’t want to touch me so they just keep me on drugs. Is that true? I mean that’s kind of the gist of a lot of the emails that I get, and I always tell them that’s absolutely not true. There is hope for you.

Dr. Steve Ryan: Yeah, and I can understand many of — first of all, not all electrophysiologists (EPs) are equal. Some are better than others, some are more experienced, some do not want to fool around with anyone who has been…in fact they will say in their statement on their websites, “We don’t take anyone who has been in persistent afib for over a year.” Why? Because it’s too difficult. But that’s not the case for some of the better people like you had your ablation by Dr. Natale, Andrea Natale, right?

Travis Van Slooten: Yes.

Dr. Steve Ryan: I mean people like him take those cases all the time.

Travis Van Slooten: Yeah, I mean 75% of his caseload is just that. But like you said, your path to a cure may not be necessarily easy but certainly do not give up and say, “Well this is my life and I just got to tolerate this for as long as I can with the drugs until my time is up.” That’s not the case. Good stuff.

Dr. Steve Ryan: I’ve got one other thing. At the last AF Symposium in January there was a presentation by a Dr. Marrouche that was perhaps the most important presentation in the last 10 or 20 years for patients. I mean it’s a groundbreaking study, and it relates to what we were talking about.

It’s called The Castle AF Clinical Trial. Now what they did was they took patients who had real bad heart problems, we’re talking ejection fraction of below 35%. These are people who probably without help would die within the next year. These are patients who had really sick hearts and they had ICDs or some kind of a monitoring device inside their heart that could tell the doctors whether they were in afib or not and what was going on in their heart. Dr. Marrouche started off by saying, he gave the example of a 50 year old patient of his who had an ejection fraction of 24%, I mean that’s really low. That guy is near death. So he had an ablation and he, by the way had moved from paroxysmal afib to persistent. He had taken anti-arrhythmic drugs that didn’t work; sotalol and Amiodarone, which Amiodarone is a killer.

Travis Van Slooten: Very toxic.

Dr. Steve Ryan: He had failed electrocardioversions. So he gave him an ablation and cured his afib and right away his ejection fraction improved from 24% to 44%.

Travis Van Slooten: Wow!

Dr. Steve Ryan: Now, what that means in practice is that this guy’s life was saved. He was no longer in danger of dying from congestive heart failure. And so he went on and described The Castle AF study with a bunch of patients like this and they found that after catheter ablation there was a 47% reduction in death rates. Now you’re saying, 47%, is that good? That’s fantastic! These patients were near death, and a 47% reduction in death rate for patients who had failing hearts, that’s incredible. In the catheter ablation group, 60% improved their ejection fraction by more than 35%. That is amazing.

Travis Van Slooten: That’s amazing.

Dr. Steve Ryan: That means that these patients who had a catheter ablation basically had their lives saved. They went from a heart that wasn’t functioning to a heart that was beating normally again. And after 5 years, 60% of the ablation group were in normal sinus rhythm compared to 22% receiving normal drug therapy. And that was you know, it could be rate control, it could be amiodarone, whatever people wanted to do. And there is a 38% reduction all across mortality. Heart failure emissions were radically improved. They didn’t go to the hospital anymore because they were cured, and obviously the quality of life was just amazingly better.

Now I want to read you something. I was at the conference and one of the interesting things about it was the question-and-answer afterwards. And I want to quote you something from Dr. Hugh Calkins at Johns Hopkins said, “This is such an unbelievably fantastic study. This is the first study to show that AF ablation improves mortality and heart failure; hats off to you for getting this done. All of us believed in this procedure but people kept asking us for hard endpoints, which you have provided.”

Here we have you and I both know how wonderful it feels to go from afib to sinus rhythm, but there were no studies up to this point that said it makes any difference. In other words, so what? So you’re in sinus rhythm, you still have the same mortality according to the AFFIRM study which is an old study that nobody follows anymore.

But now we have hard data that proves catheter ablation not only removes your symptoms, makes you afib free but lets you live longer. You live a better life and you live a longer life and the more healthy life. Now Dr. Douglas Parker from the Mayo Clinic added in the Q&A he said, I mean this is a little hyperbole, he’s exaggerating but he gets the point. “People everywhere were screaming with delight when they saw the results of your paper!” He’s right.

When you were there at that meeting it was like you were watching history unfold in a way. I mean historical finding that now everybody with afib knows that a catheter ablation will not only cure you and make you feel better but will let you live longer and more healthy life. That’s really important, probably the most important to study to come out for patients in the last 10 years.

Travis Van Slooten: Yeah, and that’s a published study so we can link to that and I can dig that up?

Dr. Steve Ryan: Yes, that’s a published study in January.

Travis Van Slooten: Perfect. And I think it’s important to, that study like you said these were people that were near death, so if they experienced that great transformation, imagine the guy that’s pretty much healthy and has paroxysmal afib, I mean the benefits for him are going to be… I mean, it’s amazing. Again, that’s why Steve and I are so passionate about this topic. There is no excuse to stay in afib.

Dr. Steve Ryan: Can you imagine, let’s say you’re someone with congestive heart failure; it feels like you’re suffocating, it feels like you’re going to die any minute. And 90% of people in this condition die within a year. And all of a sudden you have a catheter ablation and your heart is normal again, you’re having a normal ejection fraction. All of a sudden you’re out walking around, you’re talking to friends, you feel great. I mean you don’t feel perfect because it’s not…but your life you have your life back. Can you imagine what that means for these patients? It’s wonderful.

Travis Van Slooten: Yeah, and their families and friends. It’s just amazing. Thanks for sharing that study. Definitely I’ll be sure to link to that in the show notes so people can look at that. Awesome. Anything else that we need to discuss on this?

Dr. Steve Ryan: No.

Travis Van Slooten: So the message here Steve is clear. The goal for every afib patient should be to end their afib and not just manage it or tolerate it, correct?

Dr. Steve Ryan: Exactly. And we’re talking rate control where they just leave you in afib and don’t try to get you out of afib.

Travis Van Slooten: Yes, awesome. Well Steve it’s been a real pleasure talking to you and I just want to thank you for your time.

Dr. Steve Ryan: My pleasure.

Travis Van Slooten: And Steve you can be found at A-Fib.com, correct?

Dr. Steve Ryan: Yes.

Travis Van Slooten: Awesome. And just a quick plug too, Steve’s got a great book, Beat Your A-Fib, available on his website and on Amazon as well. And Steve, are you going to be rolling out an updated version of that book, because I remember at one point you had mentioned you were going to work on an update. What’s the status of that?

Dr. Steve Ryan: Well, we’re working on the second edition but it hasn’t been coming along very well. We’ll keep trying. There’s just been a lot of changes in the last 4 years that needed to be addressed. The book right now is very factual and timely and helpful, but it’s just, there’s a lot of new developments like this Castle AF study. Those are the things that need to be added to the book.

Travis Van Slooten: Yeah, and the beauty of the book is as the title implies, “Beat Your A-Fib,” not live with your Afib so that’s why I wanted to put a plug in there for that book. Steve again, thanks for your time and we’ll talk to you soon. Thanks Steve.

Dr. Steve Ryan: You’re welcome.

Outro: Thanks for listening to the podcast. Be sure to visit livingwithatrialfibrillation.com for more information, inspiration and support. Be well, and please join us next time.

Big Payoff: An A-Fib Diary Helps You Cope

Pat Truesdale’s Atrial Fibrillation was very symptomatic and she could not tolerate any of the medications. In her personal A-Fib story, she shares how keeping an A-Fib Diary helped her cope. Through interpreting her log entries, she learned what triggered her A-Fib, what signs indicated an A-Fib attack was coming on, and some actions she could do that helped her during an A-Fib episode:

63. Personal Experience of Pat Truesdale

Pat Truesdale, now A-Fib free

“…I began to learn what activated my A-Fibs and what helped during my episodes. This was a real discovery about me! I learned that ice drinks, full meals, and caffeine all triggered my A-Fibs. I started a diary to record all my symptoms.

With Steve’s [Ryan] suggestion and my local cardiologist’s, I now know I have Vagal Lone A-Fib. This means certain conditions can trigger my A-Fib attacks. This is what I learned triggers my A-Fib:

• Iced Drinks
• 
Caffeine
• 
Heavy meals
• 
Quiet times relaxing
• 
Sleep time at night
• 
Medicines
• 
Blood pressure going up
• 
Low pulse

Here are some symptoms I discovered that are indications an A-Fib episode is coming!

• High blood pressure
• 
Belching
• 
Heartburn
• 
Frequent need to pee (also ISH symptom—Isolated Systolic Hypertension)
• 
Low pulse while exercising (A-Fibs never happened during exercise)
• 
Flutters or skipped heart beats
• 
Light headache (BP is higher)

Here are some things that help me during my A-Fibs:

• Knowing A-Fib would occur after exercising while I am resting.
• Take a tablespoon of Mylanta
• Yoga breathing
• lf ice water brings it on, ice water sometimes reverts it!
• Drink plenty of water all day
• Blowing into a straw lowers the pulse rate, but does not stop the A-Fib
• Don’t Panic – Have a “This Too Shall Pass” attitude
• Walk around, but don’t exercise since my pulse is too high already

• Take 200 mg of magnesium 3X a day 

• Take a B complex vitamin every day

Doing her detective work helped her make a treatment choice:

…I wanted to get this procedure over quickly. I wanted to start feeling like a normal human being again! So, I trusted my local cardiologist’s choice and had the [ablation] procedure.”

Pat’s diary of her A-Fib triggers is not unusual, especially for people with Vagal A-Fib (though not everyone will be affected by the same triggers).

But the symptoms she describes as predicting or forewarning her A-Fib attack are new and very insightful. (Thanks for sharing, Pat.) Her list of things that helped her get through A-Fib episodes may also be helpful to you.

Be a Sleuth: Keep an Episode Diary

Take your A-Fib binder to your appointments

Share your log with your doctors

You, too, may be able to predict when you’re going to have an A-Fib attack. Start by keeping a log or diary of your A-Fib episodes for three or six months. When an episode occurs, note the day & time, duration and what you were doing, eating or drinking.

As you collect data, scrutinize your log entries for patterns and specific triggers. This may lead you to lessen or eliminate certain foods or beverages or even activities that appear to trigger your A-Fib. You may want to share your log with your doctor.

Don’t be discouraged if you don’t find a pattern, not every log will be revealing. A-Fib seems to have a mind and schedule of its own that’s often hard to predict.

A-Fib Cured in Record Time

Pat probably has set a record for getting cured of A-Fib in the shortest time. Current guidelines recognize catheter ablation as a first line therapy for treating A-Fib (remember: she couldn’t tolerate the medications). After only eight weeks of being in A-Fib, she had a successful CryoBalloon Ablation. To read Pat’s personal A-Fib story, go to Active 64-Year-Old with Family History of A-Fib Gets a CryoBalloon Ablation Eight Weeks after First A-Fib Attack.

Cloud graphic - Michele Straube, A-Fib-free after 30 years - A=Fib.com

Michele Straube, A-Fib-free after 30 years.

Beat the A-Fib Mental Games: Try an Anxiety Thoughts Log

Up to 40% of patients say their ‘quality of life’ has suffered due to their Atrial Fibrillation. For many that manifests as stress, fear and anxiety. It’s my opinion, electrophysiologists (EPs) generally don’t focus on or effectively help patients deal with the distress that A-Fib often creates.

In his personal A-Fib story, Anthony Bladon shared his techniques for dealing with the mental stress of his A-Fib. He wrote, “The constant lurking fear that A-Fib may spontaneously return, is insidious. I absolutely needed to develop coping mechanisms.”

Anthony’s Two Anxiety-Busting Techniques

Anthony Blandon photo

Anthony Blandon

First, he used a 17-minute audio relaxation exercise 1 on a daily basis (or more often) for months. He then went on to describe his second technique:

“In addition I developed an “anxiety thoughts log,” making myself write down word-for-word what the anxious thought was, as well as noting the physical event that seemed to trigger it.

By confronting my most extreme fears very explicitly (i.e. ‘Is this a TIA or A-Fib?’ ‘I’m afraid of a stroke, I might die or be disabled.’ ‘I can’t contemplate a third ablation!’), it became easier to re-state and contextualize them in a more reasonable frame of mind, thereby reducing my anxiety.

And lastly, he offer this advise:

If fears of A-Fib prey on your mind, I encourage you to seek out the help of a professional psychologist, as I did. After a few sessions of consultation, and with the continued use of tools like these, I was fully able to cope.”

To read all of Anthony Bladon’s A-Fib story, go to: Two CryoAblations, Difficult Recovery Period, Dealing with the Fear that A-Fib May Return.

Coping with Fear and Anxiety; Overview of Atrial Fibrillation

Coping ideas

Beat the Mental Stress of A-Fib

Fight your fears! Ambush your anxiety! Seek your freedom from anxiety and improve the quality of your life.

You may also want to read my article, Seven Ways to Cope with the Fear and Anxiety of Atrial Fibrillation.

A-Fib may be in your heart—
But it doesn’t have to be in your head. 

Footnote Citations    (↵ returns to text)

  1. Still available: You can listen to the free 17 minute audio relaxation exercise on the Dr. Dean Given website (or download the free mp3) at http://drdeangiven.com/?page_id=76.

Do we Need to Treat the Spouse as well as the A-Fib Patient?

I recall a heart-wrenching email I received late at night from the distressed wife of an Atrial Fibrillation patient. She described how the stress and anxiety of her husband’s A-Fib had reeked havoc with the entire family and placed the burden of their family-run business entirely on her shoulders. The impact of A-Fib had permeated their entire lives.

Her email ended on a positive note, though, as she told me she couldn’t wait for her husband to wake up so she could share the wealth of information and encouragement she had found on our website, A-Fib.com.

Quality of Life for Family and Spouse of A-Fib Patients

Research verifies that living with someone with Atrial Fibrillation may be about as stressful as actually having the condition. While A-Fib is known to lower ‘quality of life’ among patients, researchers wanted to find out how the families coped.

One-third of all A-Fib patients suffer from depression or anxiety.

In one study (Kopan, et al), researchers surveyed 260 patients and 94 spouses attending an educational symposium on living with Atrial Fibrillation.

Patients with atrial fibrillation reported a significant reduction in their quality of life, and their mates described the same, according to Dr. Bruce A. Koplan of Brigham and Women’s Hospital in Boston.

The overall quality of life effects reported by these two groups did not differ significantly. Perceived impacts were:

• Mild impact for 45.1% of patients and 43% of spouses
• Moderate impact for 28.6% of patients versus 25.8% of spouses
• Severe impact for 26.3% of patients and 31.2% of spouses

In a second study (Bohnen, et al) results were similar: 568 subjects completed the survey of which 411 were A-Fib patients and 129 were spouses/partners. The perceived effect of A-Fib on overall ‘quality of life’ was similar between patients and spouses. (Results did not change when adjusted for age and gender.)

Perceived impacts were: Mild for 42.0% of patients vs. spouses 44.1%; Moderate for 26.0% of patients vs. spouses 25.2%; and Severe for 32.0% of patients vs. spouses 31.7%.

Note: the adverse effect of A-Fib on patients’ sex life was the domain most frequently reported as being severely impaired.

Perhaps, A-Fib patients should also ask, “How can I help my family cope with the stress and anxiety of my A-Fib?”

Educate the Family Not Just the Patient

One simple solution might be to make sure the spouse comes to office visits, particularly during the early visits around the time of diagnosis, Dr. Koplan said. “Sometimes spouses come but stay in the waiting room,” he said. “But I don’t think that’s a good idea because they’re suffering too.”

According to Dr. Koplan, educational programs and other interventions aimed at improving patients’ quality of life should take spouses into account as well. Eliminating some of the unknowns may relieve the anxiety for both.

What Patients Need to Know

One of the most frequently asked questions at A-Fib.com is “What can I do for my spouse during an A-Fib attack?” Perhaps, A-Fib patients should also ask, “How can I help my family cope with the stress and anxiety of my atrial fibrillation?”

When I talk with an A-Fib patient, I always ask how their spouse or partner is doing―how they are coping. This often elicits a momentarily pause while the patient stops and ponders the impact of A-Fib on their family.

My best advice to patients is to get all your loved ones involved! Talk with them, answer their questions. Start with my report, “Top 10 Questions Families Ask about Atrial Fibrillation”, and then Why & How to Create Your ‘A-Fib Episode Action Plan’.

References for this Article
• Koplan BA, et al “Living with atrial fibrillation: Does the spouse suffer as much as the patient?” HRS meeting 2008; Abstract PO1-151.

• Phend, C.  HRS: Atrial Fibrillation Affects Family as Much as Patient. Heart Rhythm Society. Meeting coverage. MedPage Today, May 15, 2008. http://www.medpagetoday.com/meetingcoverage/hrs/9472

• Bohnen M, et al. Quality of life with atrial fibrillation: Do the spouses suffer as much as the patients? Pacing Clin Electrophysiol. 2011;34:804-809. DOI:10.1111/j.1540-8159.2011.03111.x. https://www.ncbi.nlm.nih.gov/pubmed/21535034

• Ekblad, H. et al. The Well-Being of Relatives of Patients with Atrial Fibrillation: A Critical Incident Technique Analysis.  The Open Nursing Journal, ISSN: 1874-4346 ― Volume 10, 2016. https://benthamopen.com/FULLTEXT/TONURSJ-8-48. DOI: 10.2174/1874434601408010048

FAQs Coping with A-Fib: Improving Circulation

 FAQs Coping with A-Fib: Circulation

FAQs A-Fib afib“Is there any way I can improve my circulation, without having to undergo a Catheter Ablation (poor success rate and risky at my age) or Surgery (even more risky)? I am in Chronic A-Fib. I feel tired and a little light-headed, probably because my atria aren’t pumping properly.”

In theory, yes. In Chronic A-Fib it’s not unusual to feel tired and light-headed. Your atria are fibrillating instead of pumping blood into the ventricles. Blood flow to your brain and other organs is reduced by about 15%-30%. But your ventricles still function by suctioning blood from the atria much like a turkey baster sucks up liquid.

To some extent, you can improve the strength and capacity of your ventricles by exercise, such as by walking on a treadmill or at the shopping mall.

You can also improve the oxygen saturation of your blood by using an Oxygen Concentrator ($500-$1,000). While on a treadmill, for example, you can breath in concentrated oxygen through a cannula (short tubes in your nostrils). You can measure how much oxygen is in your blood by using an pulse oximeter ($50). The desired range is 95-100% oxygen saturation. (Some athletes with good circulation use this technique to improve their athletic performance.)

Don’t dismiss the treatment options of catheter ablation or mini-maze surgery. Both have high success rates with low rates of complication.
Be cautious: While improved circulation is good for your overall health, don’t over do the exercising. It could be counterproductive. With Chronic A-Fib your heart is already working harder than a normal healthy heart. Adding even more demand can lead to more enlargement and remodeling.

The Bottom Line: the real question is whether these techniques will improve your A-Fib symptoms of feeling tired and light-headed. I’m unaware of any studies demonstrating the effectiveness of the above techniques for the symptoms of Chronic A-Fib.

Resources for this article
¤ The Link Between Infections and Inflammation in Heart Disease. Life Extension Vitamins. Last accessed November 5, 2012 http://www.lifeextensionvitamins.com/cadico6otco.html

¤ Atrial Flutter. Heart Rhythm Society website. Last accessed March 30, 2014. URL: http://www.hrsonline.org/Patient-Resources/Heart-Diseases-Disorders/Atrial-Flutter

¤ “Atrial Fibrillation Educational Material” University of Pennsylvania. 2002, p. 3.

If you find any errors on this page, email us. Y Last updated: Monday, February 13, 2017

Back to FAQs: Coping with Your A-Fib

FAQs Coping With Your Atrial Fibrillation: Day-to-Day Issues

FAQs A-Fib afibFAQs Coping With Your Atrial Fibrillation: Day-to-Day Issues

Coping with your Atrial Fibrillation means a patient and their family have many and varied questions. Here are answers to the most frequently asked questions about dealing with the day-to-day issues of having Atrial Fibrillation. (Click on the question to jump to the answer.)

1.  Specialist: “I like my cardiologist, but he has not talked about me seeing an Electrophysiologist [heart rhythm specialist]. Should I ask for a second opinion?”

2. Forewarning? Is there any way to predict when I’m going to have an A-Fib attack?”

3.  Exercise: Can I damage my heart if I exercise in A-Fib? Should I exercise when in A-Fib or skip it and rest?”

4.  Progression of A-Fib: How long do I have before my A-Fib goes into chronic or permanent A-Fib? I know it’s harder to cure. My A-Fib episodes seem to be getting longer and more frequent.”

5.  A-Flutter:They want to do an Atrial Flutter-only ablation, will that help if I possibly have A-Fib as well?”

6.  Medical Marijuana:Is smoking medical marijuana or using Marinol going to trigger or cause A-Fib? Will it help my A-Fib?

7.  Action Plan: During an A-Fib episode, when should I call paramedics (911 in the US) and/or take my husband to the hospital? I’m petrified. I need a plan.”

Related Question:When my husband has an Atrial Fibrillation episode, what can I do for him? How can I be supportive?”

Related Question: In case I have a stroke, what does my family need to know to help me? (I’m already on a blood thinner.)  What can I do to improve my odds of surviving it?”

8.  PVC/PACs:I have a lot of extra beats and palpitations (PVCs or PACs). They seem to proceed an A-Fib attack. What can or should I do about them?”

9.  DIY Monitors:What kind of monitors are available for atrial fibrillation? Is there any way to tell how often I get A-Fib or how long the episodes last?”

Related Question:My mom is 94 with A-Fib. Are there consumer heart rate monitors she can wear to alert me at work if her heart rate exceeds a certain number?”

10.  Heart Rate:Can I have A-Fib when my heart rate stays between 50-60 BPM? My doctor tells me I have A-Fib, but I don’t always have a rapid heart rate.”

Related Question:  “My doctor says I need a pacemaker because my heart rate is too slow. I’m an athlete with A-Fib and have a naturally slow heart rate.”

11.  Circulation:Can I improve my circulation, without having to undergo a Catheter Ablation or Surgery? I’m in Chronic A-Fib. ”

12.  Hereditary A-Fib: Both my uncles and my Dad have Atrial Fibrillation. I’m worried. How can I avoid developing A-Fib? Can dietary changes help? Or lifestyle changes?”

13.  Treatment choices: “How do I know which is the best A-Fib treatment option for me?”

Related Question:In one of your articles it said that having an ablation was better than living in A-Fib. If your article means all types of A-Fib [including Paroxysmal], then I will consider an ablation.”

If you find any errors on this page, email us. Y Last updated: Monday, February 13, 2017
Return to Frequently Asked Questions

MAM 2016: My Challenge to Doctors of A-Fib Patients

Steve Ryan at the entrance to the MAM 2016 symposium - A-Fib.com

Steve at the entrance to the MAM 2016 symposium

In September, I was the only patient invited to present at MAM 2016 in Zurich, Switzerland. After dinner the first night, I spoke to over 200+ surgeons and electrophysiologists (EPs).

I tried to describe for the doctors what it’s like to live in Atrial Fibrillation. Here is what I told them.

You Never Forget Your First A- Fib Attack

“As most A-Fib patients will testify, you never forget your first A- Fib attack.

Mine was 19 years ago, but I can remember it like it was yesterday. All of a sudden my heart started going crazy! It felt like my heart was trying to jump out of my chest or like there was a live fish flopping around in there. I can still feel the sheer terror, fear, confusion, anxiety and worry it created.

I remember thinking, “Am I going to die?” “Is this a heart attack?” It was one of the most terrifying experiences of my life.

Most symptomatic A-Fib patients have a similar story.

Psychological and Emotional Effects of A-Fib

A-Fib doesn’t just affect you physically, it affects you emotionally as well.

A-Fib affects not just your heart—but also your head—and your quality of life.

It affects not just your heart—but also your head—and your quality of life.

By the way, I’ve never been to a medical conference where this aspect of A-Fib was studied.  (Today is a first, I guess.)

I wish there were some way to give you a one-minute episode of A-Fib. It would change your perception of A-Fib forever. The psychological and emotional aspects of A-Fib can be as bad as or even worse than the physical.

Living in Fear (and Anger)—A-Fib Wrecked My Life

In my case, I lived in fear of the next A-Fib attack. I went through all the emotional gamut—anxiety, fear, worry, confusion, uncertainty, frustration, depression, and finally anger at my own heart.

I went through all the emotional gamut—anxiety, fear, worry, confusion, uncertainty, frustration, depression, and finally anger at my own heart.

I’m a passionate runner. I used to run along Venice Beach. But my heart would go crazy and beat too fast. I’d have to stop and walk back to our apartment. Talk about frustration!

And A-Fib affected my work. I had a great job on the soap opera “Days Of Our Lives” as part of the technical crew. But I’d get dizzy and light headed and nearly lost my job. A-Fib wrecked my life!

Research—Then Going to Bordeaux for an Ablation

Steve Ryan before PVI, in Bordeaux, France, April 1998 at A-Fib.com

Steve Ryan before PVI, in Bordeaux, France, April 1998

To make a long story short, I locked myself in a medical library and read everything I could find about Atrial Fibrillation. During this time, I tried every drug known to man including the dreaded amiodarone which made me cough up blood. Nothing worked.

I found that doctors in Bordeaux, France, had discovered how to make people A-Fib free.

One of the doctors who treated me with catheter ablation is here today, Dr. Dipen Shah. Thanks to him, Dr. Haissaguerre and Dr. Jais I’ve been A-Fib free for 18 years. I was their first US patient.

My Challenge to Doctors treating A-Fib Patients

Today I want to challenge you. Just ask yourself:

What are you doing to help your patients deal with the Fear and Anxiety of A-Fib?

What are you doing to help them cope with the Psychological and Emotional effects of A-Fib?

Helping Your Patients Deal With Stress and Anxiety

Knowledge is Power and Control! Learning about A-Fib relieves worry and anxiety. Two ways to help your patients:

1. Reference books and websites. Give your patients a short list of web sites and books which you have read and recommend. If you do this, think of how much better informed your patients will be! 

Knowledge is Power and Control! Learning about A-Fib relieves worry and anxiety.

Hint: For distribution, list your recommendations on the back of a business card. If it comes from you, your patients will devour them.

2. Counseling and medication. You should have a list you can give out of several psychiatrists who understand A-Fib and how it affects patients.

You’ll know who needs this kind of help. Men, especially, may not admit to themselves that they need help.

Thanks for Making Us A-Fib Free

Steve S. Ryan - high jump at track meet

Steve, age 75; Making a high jump at track meet

Finally, I want to thank you on behalf of all the patients you’ve made A-Fib free. There are few medical procedures as transformative and life changing as going from A-Fib to Normal Sinus Rhythm.

There is simply no comparison between living in A-Fib and being A-Fib free! Normal Sinus Rhythm is wonderful!

There’s nothing like having a heart that beats normally again. No more tiredness, dizziness. being light headed. Your body feels alive. Your brain works. You can run and exercise again. [See the photo at right of me doing the high jump at age 75!]

Thank you for giving me my life back!

After my talk I received enthusiastic complements and ‘fist bumps’.

I think I really made an impression. I don’t think anyone had ever talked to these doctors like that before.

My hope is that the effects of my talk will trickle down to helping others with Atrial Fibrillation.


Return to Reports of A-Fib Medical Symposiums & Conferences

If you find any errors on this page, email us. Last updated: Monday, December 24, 2018

 

 

A-Fib Free? Celebrate Your Independence!

Seek your Cure at A-Fib.com

I’ve been A-Fib free since 1998. You can be too! Read my story and over 80 stories of others free from the burden of Atrial Fibrillation, go to: Personal A-Fib Stories of Hope and Courage.

P.S. This week in the U.S., we celebrate the founding of our country with the July 4, 1776 signing of our Declaration of Independence. (BTW: Patti found this photo and writes: “Our family’s Fourth of July picnic celebrations always include a cold slice of watermelon.”)

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