Just like our ‘Personal A-Fib Stories of Hope‘, we can learn from each other, so I’m sharing a few of the emails I’ve received and my answers. One of the hardest emails to deal with often comes from outside the U.S.
Young A-Fib Patient: No EP Lab in Her Country
Had to give up college: One young person has such horrible A-Fib symptoms that she had to give up college. Upon investigation, I learned there’s no EP Lab in her country to treat her. My heart goes out to her, not only because she is so young to have A-Fib, but also because she’ll need to travel from her country for treatment, which her family can’t afford. (She’s too young to be on anti arrhythmic drugs for the rest of her life.)
How to help her? I’ve asked several EPs I know for ideas. Perhaps an EP will donate his services and a drug company or device manufacturer (with larger budgets) may offer a charitable donation to finance her travel and hospital stay. I hope someday that A-Fib.com can dedicate funds to help people like her. I’ll let you know what develops.
A-Fib Patients with Post-Surgery Challenges
I’ve received two emails I haven’t been able yet to address adequately.
HE STILL CAN’T EXERCISE
The first was from someone who had a successful catheter ablation a year ago, but still can’t exercise like he used to and suffers from lack of energy.
Post ablation: Usually after a successful catheter ablation, one feels better and has more energy or at least returns to the energy levels they had pre-A-Fib. I told him he should be feeling better, not worse. I shared my experience with being cured 18 years ago and participating in a Masters Track meet two days ago at age 76.
Get your O.R. report: I emailed back and asked him to get a copy of his O.R. (Operating Report) and send me a copy to review. It’s a very technical document not usually given to patients unless they ask for it (see How to Read Your Operating Room Report). When I get it, I’ll study it and email him my summary. It might explain why he is suffering from a lack of energy. I advised him, his doctor and EP may want tests to figure out what’s wrong.
SHE’S BEEN A-FIB FREE SINCE THE 90S
The second email was from someone who has been A-Fib free after surgery in the 90s. (She was probably one of the first!) Lately she has been experiencing bloating and intense pain in her legs. It’s possible that her A-Fib has returned, though her symptoms could come from other causes.
I emailed back asking where she lives so I can use our Directory of Doctors to find a good EP to refer her to.
I wrote her how monitoring devices have greatly improved over the years, like the Band-aid looking Zio Patch. She’d wear it for 1-2 weeks then her EP can analyze for any arrhythmia. But that may not be enough. Her doctor and EP may want to do more testing for a condition like congestive heart failure, or how to improve her circulation and relieve the swelling.
Contribute to the Mission of A-Fib.com
I get emails like these every day from patients needing independent, unbiased treatment information from a caring patient advocate. I’m proud that Patti and I continue to publish A-Fib.com to help meet this ongoing need.
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by Patti J. Ryan, October 2016
Called ‘Broken Heart Syndrome’, a new study finds that the death of a partner is linked to a heightened risk of developing atrial fibrillation. The risk seems to be greatest among the under 60s and when the loss of the partner was least expected.
The researchers looked at a national registry in Denmark of 88,612 people who were diagnosed with atrial fibrillation and 886,120 healthy people matched for age and sex, and between 1995 and 2014. Other factors that might influence atrial fibrillation risk were included as well.
They found that people who had lost a partner were 41% more likely to develop atrial fibrillation in the first month after losing their partner. The risk seemed to be greatest 8 to 14 days following a death and gradually subsided during the following year.
More Evidence of Mind-Heart Link
Experts suspect acute stress may directly disrupt normal heart rhythms and prompt the production of chemicals involved in inflammation.
This study adds evidence to the growing knowledge that the mind-heart link is a powerful association.
What can be done about this risk? The answer requires more research but may focus on the way the body deals with stress.
Recommended Reading: The Anatomy of Hope: How People Prevail in the Face of Illness, by Jerome E. Groopman.
Written by an oncologist and citing actual patient cases (mostly cancer), Dr. Groopman explores the role of hope in fighting disease and healing. Top scientists are interviewed who study the biological link between emotion and biological responses; the most relevant studies are reviewed.
The author shows how hope, belief and expectations can alter the course of our lives, and even of our physical body. HOPE works! (For more read my review on Amazon.com.)
Don’t Expect Miracles from Current Medications
Antiarrhythmic drugs are only effective for about 40% of patients. Many patients can’t tolerate the bad side effects. When drugs do work, over time, the they become less effective or stop working. According to Drs. Savelieva and Camm:
“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.”
Drugs don’t cure A-Fib but merely keep it at bay.
Learn All Your Treatment Options
To start, educate yourself about Atrial Fibrillation and review all your treatment options on our page: Treatments for Atrial Fibrillation.
Next, move on to the guidelines we’ve posted: Which of the A-Fib Treatment Options is Best for Me? Then, discuss these treatment options with your doctor. This should be a ‘team effort’, a decision you and your doctor will make together.
Don’t just manage your A-Fib. Seek your Cure.
The A-Fib.com Video Library is for those readers who learn visually through motion graphics, audio, personal interviews and animations.
These are my top 5 picks of basic videos for the newly diagnosed patient or anyone who wants to better understand Atrial Fibrillation. Great for the A-Fib patient’s family, friends and co-workers.
Animation of the normal heart with narration. Illustrations of the four steps of every heart beat; Identifies the parts of the heart. Describes heart arrhythmias; Visualizes how during an arrhythmia, the heart may not be able to pump enough blood to all parts of the body, especially to the brain. The lack of blood flow can damage the brain, heart, and other organs. (1:33) Posted by Apollo Hospitals Dhaka.
Through interviews and animations explains how atrial fibrillation can cause stroke and why anticoagulation is so important; Discussion of: warfarin (Coumadin), the required monitoring, interactions with food, alcohol and other drugs: newer anticoagulants (NOACs) that do not require regular testing, aren’t affected by foods [but are expensive]. The need for anticoagulation is an important decision to be made with your doctor. On-camera interviews with AF Association CEO, Trudie Lobban MBE and other experts (5:36) Developed in association with the drug maker, Boehringer Ingelheim.
Excellent illustration of the heart and a fully labeled graphic of the ‘Conduction System of the Heart’. Descriptive text accompanies each step in the animation. Step 2 animates a normally beating heart and shows the electrical signal path. Along side is the corresponding EKG tracing (signal) in perfect sync. The 3rd step shows the same heart but this time in Atrial Fibrillation. Along side is the EKG tracing of the heart in A-Fib with the EKG of a normal heart below it. From the American Heart Association website.
4. About Magnesium Deficiency with Dr. Carolyn Dean
Most A-Fib patients are deficient in Magnesium. “The Best Way to Supplement Magnesium” with Dr. Carolyn Dean, the author of The Magnesium Miracle. Getting nutrients through food is not always possible; discusses side effects of too much and how you can tell if you have a deficiency. (3:39). See also: “Importance of Balancing Calcium & Magnesium“: Why you need to have both in the body; the problem of ‘calcium overload’. (1:00)
Dr. Susan M. Sharma discusses why patients with atrial fibrillation turn to ablation when drug therapy doesn’t work. Dr. Sharma presents research findings about the success rate of catherter ablation. Includes transcript of the narration. (3:00 min.) From Insidermedicine.com.
Disclaimer: Videos provided for your convenience only; we make no endorsement of a specific treatment, physician or medical facility.
Visit our A-Fib.com Video Library
for more introductory-level videos
STEVE RYAN VIDEOS:
We’ve edited Steve’s most interesting radio and TV interviews to create several short (3-5 min.) videos. Check out Videos Featuring Steve S. Ryan, PhD, publisher of A-Fib.com.
Are you a writer? Are you passionate about a specific A-Fib topic or issue? Why not share your insights with our A-Fib.com readers? Get your byline and photo on our website. We welcome guest writers!
You don’t have to agree with the publisher’s point-of-view. For example, see the editorial by Ken Close, Editorial: A-Fib.com Bias in Coverage of Mini-Maze?
Examples of articles by other guest writers include Lyn Haye, Obesity in Young Women Doubles Chances of Developing A-Fib and Frances Koepnick’s “Patient Review: AliveCor Heart Monitor for SmartPhones“.
If you’re interested in being an A-Fib.com guest writer (or just have questions about it), send us an email. Do it NOW!
I’ve written and posted three short reports from the recent HEART TEAM: 2016 Multidisciplinary Arrhythmia Meeting (MAM) held in Zurich, Switzerland:
♥ MAM 2016: Moving A-Fib Care to a New Level (Overview)
This is an overview of the first MAM symposium which advocates for a team approach, a Hybrid Surgery/Ablation, in which EPs and surgeons work together on difficult A-Fib cases.
♥ Transcript: My Challenge to Doctors Treating A-Fib Patients – My MAM Speech
As the only patient invited to speak, you may want to read the speech I gave to over 200 EPs and surgeons sharing the patient’s point-of-view.
♥ Fantastic Experience of the Heart, or Why we were wearing 3-D glasses! A presentation by Dr. Joris Ector, from the University of Leuven, Belgium.
The Hybrid Surgery/Ablation is becoming an increasingly important and effective strategy for highly symptomatic patients with persistent atrial fibrillation or longstanding persistent atrial fibrillation who have failed one or two catheter ablations, and for the patient with a significantly enlarged left atrium.
Learn more about Hybrid Surgery/Ablation on our Cox-Maze & Mini-Maze Surgeries Treatments page.
We can now say that CryoBalloon ablation is better than RF, at least according to a secondary analysis of a recent clinical study.
In the FIRE AND ICE clinical trial by Dr. Karl-Heinz Kuck and his colleagues, 762 patients with symptomatic paroxysmal A-Fib were randomized into two groups, either RF catheter ablation or CryoBalloon ablation.
Results: Many findings were comparable. Both groups had similar results in terms of primary efficacy and safety endpoints. Furthermore, both groups had improvement in quality of life over 30 months of follow-up.
Where Results Diverged: Re-Hospitalization and Recurrence
While many of the outcomes were similar between the two groups, there were some significant differences. The CryoBalloon group had lower rates of re-hospitalization (32% with CryoBalloon versus 41.5% with RF catheter ablation). In addition, the CryoBalloon patients had fewer:
• Cardiovascular re-hospitalizations (23.8% vs 35.9%)
• Repeat ablations (11.8% vs 17.6%)
• Direct current cardioversions (3.2% vs 6.4%)
According to lead researcher, Dr. Kuck:
“The secondary analysis (of the FIRE AND ICE study) favors CryoBalloon over (RF ablation), with important implications [for EPs] on daily clinical practice.”
Dr. Wilber Su of Banner-University Medical Center in Phoenix, who was not part of this FIRE AND ICE study, concluded:
“…for most operators, CryoBalloon may be a safer and more efficient approach… . In my practice, CryoBalloon has already become the preferred approach both from personal experience as well as patient demand.”
What Patients Need to Know
Which ablation procedure is better—RF or CryoBalloon? According to the FIRE AND ICE clinical trial, we can now say that CryoBalloon is better in terms of less re-hospitalizations, repeat ablations and recurrences within a 30 month period.
More important than the energy source used to perform the ablation, is the skill and experience of the operator (EP).
Don’t Avoid RF: In practical terms, the differences weren’t so great that you should avoid EPs who prefer to use RF.
Dr. Su points out that many electrophysiologists (EPs) may continue with RF ablation because being comfortable with their choice of technology is a critical factor.
Look for Skill and Experience: More important than the energy source used to perform the ablation, is the skill and experience of the operator (EP).
The Bottom Line: When researching an EP to do your ablation, look for the best, most experienced high volume operator you can find and afford, even if you have to travel.
Caveat About CryoBalloon Ablation
CryoBalloon ablation is much easier and faster to do than RF point-by-point ablation. Consequently, some operators are entering the field with little RF ablation experience on which to build or complement their Cryo skills.
Others are doing only “anatomical ablation”—only ablating the pulmonary vein openings and not looking for and ablating non-PV triggers. (Happily in many cases, this is often all that is needed, particularly in cases of recent onset or Paroxysmal A-Fib.)
For more critical information about choosing your EP for a Cryoballoon Ablation, read my posts:
For Atrial Fibrillation Awareness Month, we are introducing a little character called “That Demon A-Fib-Zebub“. He’s that little voice that’s whispers in your ear “You don’t look sick! A-Fib’s not that bad. You can live with it”.
When That Demon A-Fib-Zebub pops up, it time to remember that A-Fib is not benign, but a progressive disease. It’s not a “nuisance arrhythmia” as some doctors consider it.
And you should not just “take your meds and get used to it” (as one doctor told his patient). Who wants this demon on their shoulder?
From time to time, That Demon A-Fib-Zebub will float into our infographics and posts.
Don’t Settle for a Lifetime on Meds: Aim for A Cure
A-Fib is definitely curable. (I was cured of my A-Fib in 1998). If you have A-Fib, no matter how long you’ve had it, you should aim for a complete and permanent cure.
Don’t listen to A-Fib-Zebub. Instead, seek encouragement from other patients. Select from our list of over 80 Personal A-Fib stories of Hope to learn how others are dealing with this demon we call Atrial Fibrillation.
Do not learn to live with Atrial Fibrillation.
Seek Your Cure!
Many surgeons performing Mini-Maze or other Maze operations for A-Fib routinely ablate/destroy the Ganglionic Plexus (GP) areas on the outside of the heart which contain clusters of nerve cells.
But recent studies show this strategy is not only ineffective but causes a lot of complications.
AFACT stands for Atrial Fibrillation and Autonomic modulation via Thoracoscopic surgery
The AFACT Trial: Mini-Maze Surgeries for Paroxysmal or Persistent A-Fib
The 2016 randomized clinical trial from Amsterdam in The Netherlands included 240 participants who underwent mini-maze surgeries: totally thoracoscopic pulmonary vein isolation for paroxysmal A-Fib or isolation plus Dallas lesion set for persistent A-Fib.
Approximately half also received ganglionic plexus ablation in which four major ganglionic plexus were ablated as well as the ligament of Marshall in the ganglionic plexus group. Patients were followed for one year.
Results: Ablating GPs—No Clinical Benefit, More Complications
The researchers found no clinical benefits associated with ganglion plexus ablation added to a thoracoscopic ablation strategy, and significantly more complications.
There were significantly more recurrences in the ganglionated plexus group (78.1%) than in the control group (51.4%). And what is worse, more than double the number of major adverse events occurred in the ganglionic plexus group such as major bleeding and sinus node dysfunction which required pacemaker implantation.
Presenting at 2016 Heart Rhythm Society scientific session, researcher Dr. Joris R de Groot stated that “ganglionic plexus ablation is associated with significantly more periprocedural major bleeding, sinus node dysfunction and pacemaker outcome, but not with improved rhythm outcome.”
He concluded that routine ganglionated plexus ablation offers “no clinical benefit” in this patient category, and “should not be performed.”
The 2016 AFACT trial may finally have determined that ablating GPs doesn’t work.
What Patients Need to Know
Surgery Not Recommended as First Choice Treatment for A-Fib: Current guidelines do not recommend surgery as a first choice or option for A-Fib. Surgery is generally more invasive, traumatic and risky than a simple catheter ablation procedure.
Routine ganglionated plexus ablation offers “no clinical benefit” and causes major permanent complications.
Most current surgical strategies have built in limitations. For example, if you have A-Flutter coming from the right atrium, current surgical techniques don’t access the right atrium or some other non-PV trigger sites. See Cox-Maze, Mini-Maze and Hybrid Surgeries. In such cases, one often needs a catheter ablation after the surgery.
Make Sure Your Surgeon Doesn’t Ablate Ganglionic Plexus Areas: If you have to have surgery for A-Fib, make sure your surgeon does not ablate the ganglionic plexus areas as part of his A-Fib surgery. Ablating the ganglionic plexus areas doesn’t improve ablation results and causes more major permanent complications. As Dr. de Groot unequivocally states, ganglionic plexus ablation “should not be performed.”
The Bottom Line if Having Mini-Maze Surgery
If you have to have surgery for A-Fib (versus a catheter ablation by an EP), make sure you ask the surgeon if they ablate the ganglionic plexus areas as part of your A-Fib surgery. (Don’t expect a surgeon to volunteer this info. You have to ask!)
If they say yes, hand them a copy of this post. Then find another surgeon.
A-Fib patients around the world are reading our A-Fib Alerts September 2016 issue.
Special Signup Bonus: Subscribe HERE and receive discounts codes to save up to 50% off my book, Beat Your A-Fib: The Essential Guide to finding Your Cure by Steve S. Ryan, PhD.
We have loads of A-Fib-related videos in our Video Library. For the reader who learns visually through motion graphics, audio, and personal interviews, these short videos are organized loosely into three levels: introductory/basic, intermediate and in-depth/advanced. Click to browse our video library.
Steve Ryan Videos: We’ve edited Steve’s most interesting radio and TV interviews to create several short (3-5 min.) videos. Check out Videos Featuring Steve S. Ryan, PhD, publisher of A-Fib.com.
A Popular Video: ‘Buyer Beware of Misleading or Inaccurate A-Fib Information’
Beware of misleading and incorrect A-Fib information published by reputable sources on the internet and in print media. Steve S. Ryan, PhD, gives three specific examples of why you need to be on the lookout for inaccurate statements about Atrial Fibrillation. 3:59 min. Click to Watch video.
Have you ever wished you could give your doctors an episode of Atrial Fibrillation, just so they would understand what you are going through? That’s what I did in Zurich last week (well, sort of).
I’m back from Zurich, Switzerland, where I was the only patient speaking at the 2-day 2016 Multidisciplinary Arrhythmia Meeting (MAM), a gathering of cardiologists and surgeons from leading institutions in Europe, the US and Asia who treat Atrial Fibrillation.
The Patient’s Point of View
After dinner on the first night, I spoke to a room of 200+ cardiac electrophysiologists (EPs) and surgeons. I was there to help them better understand A-Fib from the patient’s point of view. I focused on the psychological and emotional impact of A-Fib on patients―how the anxiety, fear and stress of the disease can be as bad (or worse) as the physical symptoms.
My Wish: Let Doctors Experience A-Fib for 60-Seconds
I shared my own journey with A-Fib and described my own stress, fear and frustration; then how I did extensive research and found my cure in Bordeaux by a catheter ablation (one of my Bordeaux doctors, Dr. Dipen Shah, was in the audience).
I next shared my wish that each of them could experience an episode of A-Fib for just 60-seconds―it would change their perspective of A-Fib forever. They wouldn’t soon forget the fear (am I going to die?) and anxiety (God, please stop this!).
My Challenge: Be a Resource for Your Patients
Then, I challenged them to go beyond the physical symptoms and help patients deal with their anxiety and fear. Knowledge is empowering so I recommended they personally check out and be ready to recommend at least two books and 2 websites about Atrial Fibrillation. In addition, I suggested they vet at least three psychiatrists who understand A-Fib and who could help patients in need of counseling and medication to address their anxiety.
Being Back in Normal Sinus Rhythm: Life Changing
And finally, I thanked them, on behalf of all the patients they have made A-Fib-free. There are few medical procedures as transformative and life changing as going from A-Fib to Normal Sinus Rhythm. For me, it was getting my life back.
I think I really made an impression. I don’t think anyone had ever talked to these doctors like that before. I hope my efforts will trickle down to helping others with A-Fib.
Multidisciplinary Arrhythmia Meeting 2016
The goal of MAM was to improve interaction between cardiac electrophysiologists (EPs) and surgeons who treat difficult A-Fib cases through a new Hybrid approach. Both a surgeon and an EP work together, one from inside the heart, the other from outside the heart. (Note: In the past, it’s been a rare occurrence for a surgeon to work with a cardiac electrophysiologist.) To learn more about the hybrid approach, see THE HYBRID SURGERY/ABLATION.
I want to thank my host, Dr. Stefano Benussi, University Hospital, Zurich, Switzerland, for his personal invitation to attend and speak at MAM 2016.
Look For My Reports
I’ll soon be writing reports on the key presentations. Just look for 2016 MAM.
I’m proud to announce the launch of The A-Fib.com Advisory Board.
Since the start of A-Fib.com in 2002, many cardiac electrophysiologists (EP) and surgeons have given me invaluable advice and support. They have helped make our website the ‘go-to’ destination for over 350,000 visitors a year. In fact, for three years running, we’ve been recognized by Healthline.com as a top A-Fib blog.
It’s a great blessing to be able to tap into the knowledge and experience of these talented professionals when writing on a difficult A-Fib subject or to get help for an A-Fib.com reader with a difficult case.
From all regions of the U.S., and from France, The Netherlands, Switzerland and Australia, these doctors may not always agree with all my positions, but they try to point me in the right direction.
The A-Fib.com Advisory Board is my way to publicly thank them and acknowledge their continued support. We invite readers to browse the names of members and their affiliations.
Our new Frequently Asked Questions & Answers (FAQs) is about the heart’s blood pumping capacity after an ablation.
“I’m a life-long runner. I recently got intermittent A-Fib. Does ablation (whether RF or Cryo) affect the heart’s blood pumping output potential because of the destruction of cardiac tissue? And if so, how much? One doc said it does.”
As a fellow runner, I understand your concern on how an ablation might affect your ability to resume your athletic activities.
Seek Your Cure: Keep in mind, with Atrial Fibrillation you lose 15% to 30% of your heart’s normal pumping volume along with lower oxygen levels. Your body and brain aren’t getting the blood and nourishment they need. An catheter ablation is an important way to improve or restore your heart’s pumping volume.
Ablate as Little Tissue as Possible: A common ablation technique for paroxysmal A-Fib (using RF or Cryo), ablates only around the opening of each Pulmonary Vein (PV) and isn’t likely to affect the heart’s output.
On the other hand, more extensive lesion patterns affecting more tissue may affect the heart’s output. For example, during a PV Wide Area Antrum Ablation, instead of just ablating around each of the PV openings, large, oval lesions are made in the left atrium encircling both the upper and lower vein openings.
My Best Advice to Runners with Atrial Fibrillation
For a runner, a more extensive ablation of the left atrium may affect heart output more than circular lesions of each vein opening. …Continue reading my answer…
This is the month we focus on reaching those who may have Atrial Fibrillation and don’t know it.
An estimated 30%−50% of those affected with Atrial Fibrillation are unaware they have it—often only learning about their A-Fib during a routine medical exam.
Of untreated patients, 35% will suffer a stroke. Half of all A-Fib-related strokes are major and disabling.
To spread the word about Atrial Fibrillation, A-Fib.com offers a new infographic to educate and inform the public about this healthcare issue.
See the full infographic here. (Then Share it, Pin it, Download it.)
We’ve posted a new personal experience story. Terry Traver of Thousand Oaks, CA, shares his 15-year battle with A-Fib.
“For over 15 years I suffered with A-Fib. It was not so bad [at first]. I stopped using caffeine and chocolate and cut back on my [alcohol] drinking.
Every three months or so I would have an episode that would last about 15 hours and then I would be fine. Meds never really helped in my case.
A-Fib Progresses to Severe and Incapacitates
In 2011, my A-Fib became severe to the point where I was almost completely incapacitated [Persistent Atrial Fibrillation]. I was not even able to work. …Continue reading Terry’s story…
Are you using the latest AliveCor ‘Kardia™ Mobile’ heart monitor? The current model (Model 1141) has been out since February. I want to update our February 2015 review.
The AliveCor Kardia attaches to an android or Apple device. And by pressing the sensors with your fingers (or thumbs), it capture single-lead, medical-grade EKGs in just 30-seconds. Instantly it shows if your heart rhythm is normal or if atrial fibrillation is detected.
How is the AliveCor Kardia Working for You?
If you are using the AliveCor Kardia, how do you typically use it? Regularly? Or only when you think you’re in A-Fib?
Do you take readings just for your own peace of mind or do you transfer the data to your doctor? Are you satisfied with its performance? Do you recommend the Alivecor Kardia or other brand monitor to others with A-Fib?
Share Your Insights
Do you have first-hand experience? I’m asking any A-Fib.com readers using the latest AliveCor Kardia model to share your product experiences with me. Just send me an Email with your impressions.
Other Heart Monitors: I’m also interested if you are using another brand of handheld heart monitor, such as the BodiMetrics Performance Monitor.