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

Copy of FAQs Coping with A-Fib: Pacemaker for Too Slow a Heart?

 FAQs Coping with A-Fib: Pacemaker

FAQs A-Fib afib“Now my doctor says I need a pacemaker, because my heart rate is too slow and because I’m developing pauses.

I’m an athlete with A-Fib and have a naturally slow heart rate. Since I developed A-Fib, I was put on atenolol (a beta blocker) which really slows down my heart rate.  What should I do?”

Get a second opinion. It’s crazy to go through the risks and lifestyle disruptions of having a pacemaker implanted just to be able to continue taking atenolol.

Because you are an athlete, your heart rate is naturally slow. But it’s normal for you.

As long as you feel fine and aren’t fainting from lack of blood flow, don’t be talked into getting a pacemaker. A slow or even very slow heart rate usually doesn’t cause any harm. As for heart rates, “normal” is indeed a wide swath.

In the words of Dr. John Mandrola:

“Do not implant pacemakers in patients with nonsymptomatic bradycardia (slow heart rate).The same holds for pauses, though they are certainly of more concern than a slow heart rate. Nonsymptomatic slow heart rate or pauses don’t justify exposing patients to the risks of implanting a pacemaker.”

Do not implant pacemakers in patients with nonsymptomatic bradycardia. This includes the wide spectrum of sinus node dysfunction (SND), asymptomatic pauses in patients with permanent AF, and young patients with medication-induced bradycardia. Humans exhibit tremendous variation of heart rate, and impressively slow heart rates frequently cause patients no harm. As for heart rates, ”normal” is indeed a wide swath. Unlike the more sinister high-degree AV block, SND is not immediately fatal. In 2012, there exist many strategies for the treatment of arrhythmia that do not include exposing patients to the risks of implanting a permanent intravascular device.

But be advised that pacemakers tend to have bad effects over the long term, “…long-term morbidity (is) associated with a pacemaker.”
 Another consideration is that implanting pacemaker ‘leads’ in the veins of the upper chest often prevents or hinders future procedures that require vascular access like a PVI. A pacemaker usually isn’t implanted unless your heart rate is too slow or you have Sinus Node and/or Atrioventricular (AV) Node problems.

Resources for this article
¤  Mandrola, John “Choosing wisely: The electrophysiology list of five don’ts.” http://blogs.theheart.org/trials-and-fibrillations-with-dr-john-mandrola/2012/4/9/choosing-wisely.

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

¤  “Should atrial fibrillation ablation be considered first-line therapy for some patients?” Circulation 2005;112:1214-1231, p. 1228.

Back to FAQs: Coping with Your A-Fib 
Last updated: Wednesday, August 26, 2020

Update->FAQs Coping with A-Fib Stroke: What Your Family Should Learn Now

 FAQs Coping with A-Fib: Stroke Action Plan

FAQs A-Fib afib“In case I have an A-Fib-related 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?

Stroke is the most dreaded effect of having A-Fib. And an A-Fib-related stroke is usually worse because the clots tends to be larger. They often result in death or permanent disability.

Here are some basic facts and steps you and your family can take to prepare for and what to do if stroke strikes any member of your family.

Prepare Your Plan: The 4 Steps

For your own and your family’s peace of mind, you need to create a ‘Stroke Action Plan’.

Step 1: Learn the Signs of a Stroke

Make it a family affair. Discuss the most common signs of stroke: sudden weakness of the face, arm or leg, most often on one side of the body.  Stroke may be associated with a headache, or may be completely painless. Each person may have different stroke warning signs.

Step 2―Ask Your Doctor

Discuss with your doctor what actions to take in case of stroke. For example, some doctors recommend aspirin to help avoid a second ischemic stroke (A-Fib). If so, ask what dosage.

Step 3―Locate Your Nearest ‘Certified Stroke Center’

Why a Certified Stroke Center? If a stroke victim gets to a Certified Stroke Center within four hours, there is a good chance specialists can dissolve the clot without any lasting damage.

Only a fraction of the 5,800 acute-care hospitals in the U.S are certified as providing state-of-the-art stroke care.

A certified or ‘Advanced Comprehensive Stroke Center’ is typically the largest and best-equipped hospital in a given geographical area that can treat any kind of stroke or stroke complication.

A Certified Stroke Center will have drugs such as Tissue Plasminogen Activator (tPA) to dissolve the clot. Can use Clopidogrel or acetylsalicylic acid (ASA) to stop platelets from clumping together to form clots. Or use anticoagulants to keep existing blood clots from getting larger.

So do your homework. To find the nearest certified or ‘Advanced Comprehensive Stroke Center’ check these listings:

Find A Certified U.S. Stroke Center Near You/NPR News
Find a Certified Comprehensive Stroke Center

Step 4―Post Your ‘Stroke Action Plan’

Write up the three components of your plan (i.e., the signs of stroke, aspirin dosage and location of the nearest Certified Stroke Center).

What about your workplace? Locate the nearest Certified Stroke Center to your job, too, and post a copy.

Also, print handouts with the name and address of the nearest Certified Stroke Center (Advanced Comprehensive Stroke Center) for EMS responders. Keep a bottle of aspirin nearby.

Store your ‘Stroke Action Plan’ in a special binder or post so that family can easily find the information.

If a Stroke Strikes: Work the Plan

1. Immediately call your emergency medical services (EMS)―even if the person having the stroke doesn’t want you to. (e.g., 911 in US and Canada, 0000 in Australia, 999 in the UK.)

Note: DO NOT try to diagnose the problem by yourself, and DO NOT wait to see if the symptoms go away on their own.

2. While waiting for EMS, administer aspirin in the proper dosage (if advised by your doctor beforehand) to help avoid a second stroke.

Note: The emergency operator might connect you to a hospital that gives you instructions based on symptoms.

3. When EMS arrives, tell them to take the patient to your nearest Certified Stroke Center (give them a handout with the name and address).

Note: If necessary, be firm, insist they go to your choice of Certified Stroke Center. (Realize that some paramedics and ambulance services have side deals with hospitals to take patients to their hospitals, even if it’s not the right hospital for stroke victims.)

The Wrap Up

A ‘Stroke Action Plan’ with specific steps is reassuring during a medical emergency and helps everyone stay calm. Your family will be confident they’re supporting you in taking the right action at the right time.

The only guarantee of not having an A-Fib stroke is to no longer have A-Fib.

Know that quickly going to a certified or ‘Advanced Comprehensive Stroke Center’ may save you from the debilitating effects of an A-Fib stroke, or even death.

For additional reading, see Ablation Reduces Stroke Risk to that of a Normal Person.

References for this article
Chen ZM, et al. Indications for early aspirin use in acute ischemic stroke: A combined analysis of 40,000 randomized patients from the Chinese acute stroke trial and the international stroke trial. On behalf of the CAST and IST collaborative groups. Stroke. 2000 Jun;31(6):1240-9

Why Choose Comprehensive Stroke Center Certification. The Joint Commission. June 20, 2014. http://tinyurl.com/JC-comprehensive-stroke-ctr

Emergency Telephone Numbers Around the World. ChartBin.com URL: http://chartsbin.com/view/1983

Find A Certified U.S. Stroke Center Near You. NPR News. Updated October 29, 2015. URL: http://tinyurl.com/certified-stroke-center

Find a Certified Comprehensive Stroke Center: Search by US state. The Internet Stroke Center.  URL: http://www.strokecenter.org/trials/centers/

Back to FAQs: Coping with Your A-Fib
Last updated: Wednesday, August 26, 2020

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

Research verifies that the loved ones living with someone in Atrial Fibrillation may be about as stressed as actually having the condition.

In one study the partners of A-Fib patients reported a significant reduction in their quality of life, to the same degree as the patient. (Note: Most severely impaired was a couple’s sex life.)

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, says Dr. Bruce A. Koplan of Brigham and Women’s Hospital in Boston.

 Research tells us A-Fib is just as stressful for the patient’s partner.
“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.”

Educational programs and other interventions to eliminate some of the unknowns may relieve the anxiety for the patient and their partner leading to improved quality of life for both.

Get all Your Loved Ones Involved

One of the most frequently asked questions I get is from the patient’s partner: “What can I do for my spouse during an A-Fib attack?”

Perhaps, just as important, A-Fib patients should be asking “How can I help my family cope with the stress and anxiety of my Atrial Fibrillation?”

A Momentary Pause: 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! Knowledge is empowering and reduces stress and anxiety.

Talk with them, answer their questions. To help you, download my free report, Top 10 Questions Families Ask about Atrial Fibrillation”.

Be Confident & Stay Calm

Share your A-Fib plan

In addition, for your family’s peace of mind, learn Why & How to Create Your ‘A-Fib Episode Action Plan’. During an A-Fib attack, an A-Fib Action Plan with specific steps is reassuring and helps everyone stay calm. Your family will be confident they’re supporting you in taking the right action at the right time.

Discuss your A-Fib Action Plan with your loved ones and answer their questions. Post a copy in a prominent place where your family can find it easily.

Knowledge Empowers, Reduces Stress and Anxiety

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

It Takes Time to Find the Right Treatment Plan for You: Learn all Your Options

A-Fib begets A-Fib. The longer you have A-Fib, the greater the risk of your A-Fib episodes becoming more frequent and longer, often leading to continuous A-Fib. (However, some people never progress to more serious A-Fib stages.)

Most Atrial Fibrillation patients should look beyond the typical antiarrhythmic drug therapy. These drugs don’t cure A-Fib but merely keep it at bay. According to Drs. Irina Savelieva and John Camm of St. George’s University of London:

“The plethora of antiarrhythmic drugs currently available for the treatment of A-Fib is a reflection that none is wholly satisfactory, each having limited efficacy combined with poor safety and tolerability.”

Educate Yourself: Learn All Your Options

A-Fib is not a “one-size fits all” type of disease. You need a personalized treatment plan. To begin, first educate yourself about Atrial Fibrillation, and then review all your treatment options. See Overview of A-Fib, Find the Right Doctor for You and Treatments for Atrial Fibrillation. A-Fib treatments include both short-term and long-term approaches aimed at controlling or eliminating the abnormal heart rhythm associated with A-Fib.

Next, you can move on to the guidelines we’ve posted: Which of the A-Fib Treatment Options is Best for Me? You are then prepared to discuss these treatment options with your doctor. Keep in mind, this should be a ‘team effort’, a decision you and your doctor will make together.

Build a Support System: We Can Help

You are not alone. Many, many others with A-Fib have been where you are now and are ready to share their experiences and insights.

Our A-Fib Support Volunteers: Having someone you can turn to for advice, emotional support, and a sense of hope that you can be cured, may bring you peace of mind. Our support volunteers offer you one-to-one support through exchanging emails and sharing their stories. To learn more, go to our page A-Fib.com’s A-Fib Support Volunteers.

Positive Thoughts/Prayer Group: At A-Fib.com we believe in healing through hope, belief, prayer and in the power of positive thoughts. To learn more about our group and how to send in your request, go to our A-Fib.com Positive Thoughts/Prayer Group.

Build Your A-Fib Treatment Plan: Know All Your Options

Resource for this article
Savelieva I, Camm J. Update on atrial fibrillation: part II. Clin Cardiol. 2008 Mar;31(3):102-8. Review. PubMed PMID: 18383050. URL Retrieved Nov 17, 2011. http://www.ncbi.nlm.nih.gov/pubmed?term=PMID%3A%2018383050

Stop Panic Attacks, Use the THOUGHTARREST Technique by Janco Vorster

Janco Vorster is a blogger who shares his heart arrhythmia journey at My Afib Heart. Diagnosed at age 24, he had his first anxiety attack a couple years later. Fear was his closest companion for a while. He writes, “Then as if sent from above I went to see a psychiatrist. He helped me to understand that I cannot be in control all the time.”

In his post, When Panic And Anxiety Wants to Take Over Your World, Janco describes his method for dealing with the anxiety that often accompanies Atrial Fibrillation. He writes that his THOUGHTARREST technique has not only helped him with his panic attacks, but its use and understanding has had a big impact in his life.

THOUGHTARREST

Stop Panic! Arrest Your Thoughts

1. DO NOT DENY OR SUPPRESS IT
Look deep into what you are really fearing in the thought or symptoms you are experiencing. Dismantle the thought.

2. WRITE IT DOWN, OR TALK ABOUT IT.
When you write down your thought you “capture” it. Write down how bad it is or was. Don’t sugarcoat it!

3. WRITE DOWN A “BETTER” STATEMENT.
If you get thoughts of “I cannot breathe” rather write down “I feel as if I cannot breathe but I am.”

4. UNMASK AND EXPOSE THE FALSE THOUGHT.
Now that you have your panic attack or anxiety thought pinned down on paper you can expose it as false, and relax.

WWW.MYAFIBHEART.COM

About Janco Vorster: He was born with Tetralogy of Fallot (TOF), a birth defect that affects normal blood flow through the heart. After surgery as a child, his TOF (and an enlarged right atria), made him susceptible to heart arrhythmia. His A-Fib was diagnosed at age 24. After numerous cardioversions over several years, he had an ablation (followed by some intermittent episodes afterwards). He lives in South Africa and has been A-Fib free for several years. His blog is My Afib Heart.

Read the Janco Vorster post, “4 Steps Before You Do a THOUGHTARREST” at My Afib Heart. It’s based on a mixture of CPT (Cognitive Processing Therapy), CBT (Cognitive Behavioral Therapy) and his own experience with panic attacks.

Atrial Fibrillation Patients: Guide on How to Get Started with Yoga

In our article, FAQs about Natural Therapies: Yoga and A-Fib, Dr. Dhanunjaya Lakkireddy describes his research with A-Fib patients and how yoga provides a powerful connection between mind and body. “It affects heart rhythm through its significant influence on the [nervous system].” It improves symptoms and arrhythmia burden, reduces anxiety and depression, and improves quality of life (QoL).”

Yoga can be adjusted to any level or intensity. Just start slowly! It doesn’t need much equipment: a mat to prevent slipping and provide padding and perhaps a folded blanket, when needed, to support your knees.

Dr. Lakkireddy cautions that yoga isn’t a substitute for medical treatment, but it can be a good adjunct.

Beginner’s Yoga Guide for A-Fib Patients

We found a great article, Yoga for Atrial Fibrillation, on EverydayHealth.com that offers a beginner’s yoga guide for A-Fib patients.

To get you started, they include directions for seven simple poses each with an illustration. Here’s an example of the instructions:

Yoga for Atrial Fibrillation: Table Pose
This pose helps you warm up and is a starting position for other yoga moves. How to do it:
1. Come to the floor on your hands and knees. Bring the knees hip-width apart, with feet directly behind the knees. Bring palms directly under the shoulders with fingers facing forward.

Photo credit: yogabasics.com

2. Look down between the palms and allow the back to be flat. Press into the palms to drop the shoulders slightly away from the ears. Press tailbone toward the back wall and the crown of the head toward the front wall to lengthen spine.
3. Breathe deeply and hold for 1-3 breaths. 
Special considerations: Place a blanket under the knees to protect them from pressure and stress. Make fists with your hands to reduce pressure on the wrists. Avoid this pose if you’ve had recent or chronic knee or hip injury or inflammation.

For the other six poses and to read the entire article, go to Yoga for Atrial Fibrillation at EverydayHealth.com. According to YogaBasics.com: “By concentrating on your breathing and being present in the poses, you’ll feel the benefits immediately.”

For Atrial Fibrillation patients, yoga can be an effective complementary therapy and a part of your A-Fib treatment plan. Also see our article, FAQs about Natural Therapies: Yoga and A-Fib.

Always consult your doctor before starting a yoga exercise program. For example, if you have high blood pressure, you may need to avoid yoga poses in which your head and heart are lower than the rest of your body, such as the Downward-Facing Dog.

Anatomy of Hatha Yoga: A Manual for Students, Teachers, and Practitioners
by H. David Coulter, PhD

Resources for this article
Lakkireddy, D., et al. Effect of Yoga on Arrhythmia Burden, Anxiety, Depression, and Quality of Life in Paroxysmal Atrial Fibrillation. Journal of the American College of Cardiology Mar 2013, 61 (11) 1177-1182; doi: 10.1016/j.jacc.2012.11.060

Yoga for Atrial Fibrillation. EverydayHealth.com. Last updated: 11/14/2017.  https://www.everydayhealth.com/heart-health/atrial-fibrillation/yoga-atrial-fibrillation/

Wahlstrom, M, et al. Effects of yoga in patients with paroxysmal atrial fibrillation—a randomized controlled study. European Journal of Cardiovascular Nursing. Vol 16, Issue 1, pp. 57 – 63. March 14, 2016. https://doi.org/10.1177/1474515116637734

Build Your ‘Dream Team’ to Seek Your A-Fib Cure (or Best Outcome for You)

Treating Atrial Fibrillation doesn’t sound like a team sport. But you don’t beat your A-Fib on your own. It takes a team of healthcare professionals and wellness experts to help you seek your A-Fib cure!

Your ‘Dream Team’ will be unique to you, based on your age, symptoms, and other medical conditions.

The Core Members of your ‘Dream Team’ 

♥ Your primary care physician: often diagnoses your atrial fibrillation; may prescribe and manage your initial medications (especially for risk of stroke); usually refers you to a cardiologist (hopefully a heart rhythm specialist).

♥ Cardiac Electrophysiologist (EP): a cardiologist who specializes in the electrical functions of your heart; often the leader of your ‘Dream Team’! (Read: How to Find the Right Doctor for You.) In addition to your EP, other cardiac professionals may be added to your team including:

▪ Cardiac procedure specialist: if you need a catheter ablation, a left atrial appendage occlusion device (e.g. the Watchman device), a pacemaker, or perhaps an AV Node Ablation with Pacemaker procedure.

▪ Cardiac surgeon: if you need a Maze or Mini-maze surgery

Recruit Beyond Your Team Starters

Don’t stop with just recruiting your star performers. Many of our readers at A-Fib.com have drafted other healthcare practitioners and wellness experts to join their ‘Dream Team’. You may benefit from one or more of the following:

Sleep specialist: More than 40% of A-Fib patients also suffer from sleep apnea. Everyone with A-Fib should be tested (Sleep Lab or home study). In fact, your EP may require testing before agreeing to perform a catheter ablation. Learn more about sleep apnea.

♥ Nutritional counselor/Naturopathic physician: Many A-Fib patients have found relief of symptoms through herbal and mineral supplementation (starting with magnesium and potassium). Learn more about a more integrated or natural method of healthcare.

♥ Diet & Exercise specialist: Losing weight through diet and exercise has benefited many A-Fib patients. Some report their A-Fib symptoms have diminished or stopped completely through changes in lifestyle. Read more about a heart-healthy eating plan.

♥ Complementary treatment practitioners:

▪ Acupuncture: Many A-Fib patients have reported symptom relief with acupuncture. Research indicates that acupuncture may have an anti-arrhythmic effect in patients with atrial fibrillation. Read about acupuncture research.

▪ Yoga: The practice of yoga has benefits, many A-Fib patients report. Specifically, the number of symptomatic A-Fib events were down, heart beat and blood pressure dropped, depression eased and anxiety decreased. Read about A-Fib and yoga.

▪ Chiropractor: Several A-Fib.com patients have reported their symptoms were relieved with chiropractic treatments. In fact, a few clinical studies have focused on arrhythmia and ‘manipulation’ techniques. Read more.

Where to Start: Ask for Referrals

To form your ‘Dream Team’ of health and wellness experts, ask for referrals from other A-Fib patients and from your family and friends.

If you know nurses or support staff who work in the cardiology field or in Electrophysiology (EP) labs, they can be great resources. Also, seek advice from the nurses, nurse practitioners and physician assistants at your doctors’ offices.

To find the right doctor, start with our page, How to Find the Right Doctor for You

Don’t depend on websites of patient’ ratings of doctors or with patient surveys. They lend themselves to manipulation. Ratings often reflect how well-liked a doctor is, not competency. Consult several sites. Read my article, Don’t be Fooled by Pay-to-Play Online Doctor Referral Sites.

Why You Need an A-Fib Notebook and 3-Ring Binder

As an A-Fib patient, you want to create a ‘treatment plan’—an organized path to finding your A-Fib cure or best outcome. Forming your ‘Dream Team’ is an important step toward this goal.

As you form your team, you will want to organize the information you are collecting. Start with a notebook and a three-ring binder or a file folder.

Your A-Fib binder is where you should file and organize all your A-Fib-related treatment information. Learn What to Include in Your A-Fib Binder

Remember, above all,
Aim for Your A-Fib Cure!

Reference for this Article
Iliades, C. Team approach: Your Atrial Fibrillation Management Team. Everydayhealth.com. 5/30/2013 http://www.everydayhealth.com/hs/atrial-fibrillation-and-stroke/your-afib-management-team/

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?

Click to open in new window

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.

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