Silent Persistent A-Fib: A Proactive Patient’s 3-Year Journey to Burden Relief

By Frances E. Koepnick, Athens, GA, June, 2017

Frances, now A-Fib free after 3 yrs.

 “I was diagnosed with atrial fibrillation (A-Fib) in April 2014, at age 69, while undergoing a pre-operative physical examination prior to hip replacement surgery. This was a surprising development since my A-Fib was completely “silent” with no symptoms.

My A-Fib was diagnosed as being ‘persistent’ rather than ‘paroxysmal’. These two forms of A-Fib are quite different. However, both types of A-Fib are usually treated initially with prescription drugs. I was given the beta blocker atenolol to reduce my heart rate and the anti-coagulant Eliquis to prevent the formation of blood clots.

Family History of Atrial Fibrillation

Unlike many other stories on A-Fib.com, I was familiar with Atrial Fibrillation. I am the third person in my family with A-Fib after my mother and older sister. However, they both had paroxysmal A-Fib while I was diagnosed with persistent A-Fib.

On-going studies indicate that there may be a genetic link to A-Fib.  Consequently, if someone in your immediate family has been diagnosed with A-Fib, then your risk of developing it in the future may be increased.

Six Cardioversions: Not a Long-Term Solution

Eventually, I underwent a total of six cardioversions in an attempt to return my heart to normal sinus rhythm. Three of these procedures were electrical cardioversions and three were by means of intravenous drugs. I soon learned that cardioversion is rarely effective for maintaining normal sinus rhythm over a significant period of time.

Consequently, I did not consider it to be a long-term solution for my A-Fib.

The First Two Cardiologists Advised: ‘Just Take Your Medications and Live with A-Fib’―No! No! No!

I eventually consulted a total of five cardiologists―three in the state of Georgia, one in Manhattan and one in Bordeaux, France. I have a background in anatomy/physiology as well as microbiology, so I asked a lot of questions and managed to irritate several physicians.

The advice of the first two cardiologists was to “just take my medications and live with A-Fib”.

If your cardiologist recommends this treatment regimen, I urge you to get a second, third or even fourth opinion.

More Interviews: Three Electrophysiologists & Lots of Questions

After my first electrical cardioversion in March 2015, my heart remained in normal sinus rhythm for only 12 hours. At that time, I had been in persistent A-Fib for one year, and was re-classified as long-term persistent A-Fib. That motivated me to pursue a catheter ablation.

I ultimately discussed an ablation procedure with three different Electrophysiologists and consequently learned to ask lots of questions such as:

• What is the percentage rate of successful ablations performed by this cardiologist/electrophysiologist?
• What is the risk of serious complications?
• How many ablations does this cardiologist/electrophysiologist perform at his/her facility annually? (My opinion is: “the more, the better”.)
• What type of instrumentation is used for electrical cardiac imaging? (My opinion is the CardioInsight or ECGI/ECVUE imaging system; FDA-approved for the USA in February 2017.)

I finally located a cardiologist/electrophysiologist (EP) at a regional medical center who performed ablations for long-term persistent A-Fib.

Look for the Best EP―and Ablate Sooner Rather Than Later

At this point I had been in A-fib for 17 months. The first 7 months of this time frame was necessary due to my need for two total hip replacements which were performed 5 months apart. However, the additional 12 month delay was due to my procrastination in seeking a third opinion from another EP.  That was definitely a mistake. This additional delay reduced my success rate for a successful first ablation to approximately 65% and it also increased the chance that I might need a second ablation in the future. (I anticipated I might need a 2^nd ablation because of this.) 

Ablation for Persistent A-Fib is More Difficult

There are many competent electrophysiologists in the USA who have been successful with ablations for paroxysmal A-Fib. However, ablations for persistent and long-term persistent A-Fib are more difficult, require a higher level of expertise, and are performed less frequently in the USA.

Bordeaux, France: Consequently, in September, 2015 I decided to have my ablation for long-term persistent A-Fib performed in Bordeaux, France. I chose this location because it’s internationally known for its cardiologists/Electrophysiologists as well as for its use of the computerized CardioInsight or ECGI imaging system. [They cured Steve Ryan’s A-Fib back in 1998.]

This arrhythmia group is headed by Dr. Michel Haissaguerre and Dr. Pierre Jais, and they perform ablations for paroxysmal, persistent and long-term persistent A-Fib. Of course, French citizens are first priority for admission, but out-of-country patients can be wait-listed.

Fran’s EP: Pierre Jais MD

Not Covered by My Insurance: I do need to mention that the decision to travel to Bordeaux, France, was financially significant. My medical treatment was not covered by insurance.

The Hopital Haut Leveque-Cardiologique in Bordeaux is not an impressive building. It was most likely built in the 1970s, the patient rooms are not air conditioned, and the parking lot is gravel rather than pavement. However, the French government obviously invests their health care funds in medical research, excellent physicians, quality hospital staffing, and state-of-the-art medical equipment.

The physicians and most of the hospital staff speak English, so there really isn’t a significant language barrier problem. I did purchase an English/French app with medical terminology for my smartphone, and it was helpful on occasion. [In Bordeaux they have broken ground on the new LIRYC Institute which is intended to become one of the premier research institutions in Europe.]

Difficult Six-Hour Ablation at Bordeaux, then Electrical Cardioversions

My first ablation by Dr. Pierre Jais was a difficult procedure requiring six hours for completion. [Not only were her Pulmonary Vein openings isolated, but in addition, non-PV triggers were identified, mapped, and isolated using the CardioInsight ECGI mapping system.]

Fran wearing the mapping vest.

During the three-week time period following this ablation, two electrical Cardioversions were also required. This was later explained to me by Dr. Jais as the interior of the atria needed to heal sufficiently so that scar tissue would successfully block abnormal electrical signals.

After this ablation, I continued to take the anticoagulant Eliquis and was also put on the anti-arrhythmic drug amiodarone for six months.

Normal Sinus Rhythm for 11 Months, then Atypical Flutter

I knew at the time of my first ablation that I most likely would require a second ablation due to my predicted one-year success rate of 65%.

My heart actually stayed in normal sinus rhythm (NSR) for a total of 11 months. Then I experienced three episodes of atypical atrial flutter over a two-week period, and each of these episodes resulted in an admission to the emergency room. After three intravenous drug Cardioversions, I was placed back on amiodarone to maintain a normal sinus rhythm.

Suspected Sleep Apnea

After my third ER admission, I suspected that these episodes might have been triggered by obstructive sleep apnea (OSA). I was waking up during the night with an extremely uncomfortable dry mouth even though my head was elevated while sleeping.

I consulted my dentist, and he referred me to a cardiologist/sleep specialist who ordered a sleep study. This study confirmed that my OAS was “severe” during periods of rapid eye movement sleep (REM).

Sleep Apnea and A-Fib: I would like to emphasize that OSA is a significant “trigger” for A-Fib. A recent study found that 43% of individuals with A-Fib also had a diagnosis of OSA.

This means that all individuals diagnosed with A-Fib need to be screened with a sleep study. If OSA is confirmed, it needs to be addressed immediately so that any future treatment for A-Fib is not compromised.

OSA can be controlled by continuous positive airway pressure (CPAP) machines whereby you wear a face mask at night when sleeping. I decided instead to have a custom oral appliance (FDA-approved TAP3) made by a sleep dentist. This oral appliance prevents my lower jaw from moving out of position when sleeping and thereby ensures that my airway remains open.

Second Ablation by Dr. Vivek Reddy Using CardioInsight ECGI

Dr Vivek Reddy, Mt Sinai Hospital

My second ablation was performed by Dr. Vivek Reddy at Mount Sinai Hospital in Manhattan, New York in March 2017.

I had been referred to Dr. Reddy by my doctors in Bordeaux. It was fortuitous that Mount Sinai Hospital had just obtained the FDA-approved CardioInsight (ECGI) imaging system which was previously only available in Europe.

The physicians, staff and facilities at Mount Sinai Hospital are absolutely excellent. The arrhythmia group there is headed by Dr. Reddy, and I found him to be professional, personable and comfortable answering my questions.

My second ablation was another difficult, six-hour procedure, but ultimately successful. [If interested in Dr. Reddy’s O.R. Report on Frances’ ablation, see my comments below.]

I recommend that you go online to the Mount Sinai Hospital website and then watch short informative videos on A-Fib which are presented by Dr. Reddy himself. See What Do I Need to Know About Atrial Fibrillation? (21:29).

Success & Lessons Learned

My 3-year journey with A-Fib has included numerous Cardioversions, two ablations and a belated diagnosis of underlying obstructive sleep apnea (OSA).

It’s now about three months since my second ablation, and I am doing well. I no longer am taking the anti-arrhythmic drug amiodarone, but continue on the anticoagulant Eliquis.

My recommendations:  Look locally, regionally, nationally and perhaps internationally in order to identify the best option for a successful ablation. (Yes, consider traveling to find the best EP for you.)

It is also important to seek an ablation sooner rather than later as a delay may decrease your chance of a successful procedure.

Seek up-to-date information : I highly recommend the website, www.A-Fib.com for up-to-date information on A-Fib. This website is run by Steve Ryan, Ph.D. and―although he is not a medical doctor― he is an A-Fib expert who explains A-Fib in terms readily understood by the average person.

Steve also attends the AF International Symposium held annually in the USA, and his synopses of conference presentations contain the latest in A-Fib research. Steve was and continues to be my “A-Fib coach”.

Smartphone app: Finally, I recommend the AliveCor Kardia device ($99) and app for smartphones. This app determines your heart rate in beats per minute (BPM) and also records a 30-second electrocardiogram (ECG) using two electrodes attached to the back of your phone. Kardia’s software interprets your ECG as “normal” or as “possible A-Fib”, and you can email a copy of an ECG directly to your cardiologist.” [Also see our 2016 Update: AliveCor Kardia Review by Travis Van Slooten]

Added 1/12/21: Dr. Reddy had to ablate at Frances’ Left Atrial Appendage (LAA) which did terminate her A-Fib. But electrically isolating the LAA can result in the LAA no longer contracting and pumping out properly. This could result in clots forming in the LAA and the development of an A-Fib stroke. Frances had to be put on anticoagulants. Dr. Reddy said she would need a Watchman device installed within 90 days to close off the LAA due to this increased risk of stroke.

But Frances discovered she is allergic to nickel, a primary component of the Watchman device. Many people have this nickel allergy, especially women who wear jewelry. Frances obviously didn’t want to suffer an A-Fib stroke. She also didn’t want to have to take anticoagulants for the rest of her life. She found she didn’t have a lot of options. After extensive research, she decided on the second generation AtriClip (nickel free) which can be installed by a surgical heart operation. See https://a-fib.com/considering-a-laa-occlusion-closure-watch-out-for-nickel-allergy/ One major advantage of the AtriClip is that it essentially eliminates the LAA which can be a significant source of A-Fib signals. But the AtriClip didn’t work anatomically for Frances, because the blind end of her LAA had attached itself to the surface of her heart.

I welcome your email,
Frances Koepnick
fek67@hotmail.com

Editor’s Comments:

We’re most grateful to Frances for her story. She’s a great example of a proactive patient. When told to ‘just take her meds and live with A-Fib’, she said NO! Even though she was relatively symptom-free, she knew how destructive A-Fib can be over time.

Don’t Just Live in A-Fib: Leaving patients in A-Fib overworks the heart and leads to remodeling and fibrosis which increase the risk of stroke, and also doubles the risk of developing dementia. For more read: ‘Drug Therapies’: Rate Control and A-Fib Doubles Risk of Dementia. If you hear someone tell you to just live with A-Fib, get a second opinion (or third, or fourth!).

Educate Yourself About A-Fib―Be Proactive: Frances knew she would be a more difficult case to fix. She researched who were the best EPs for her case. She asked all the right questions of the EPs she interviewed. (See Selecting a New Doctor? 10 Questions You’ve Got to Ask.) She even went to Bordeaux, France, on her own dime.

Find the Best EP You Can: All Electrophysiologists are not equal. Like Frances, don’t just settle for the nearest EP. Consider traveling to the best, most experienced EP you can afford, particularly if you have progressed to persistent A-Fib which is harder to fix. (See Finding the Right Doctor for You and Your A-Fib.)

Silent A-Fib: If You’re 65 or Older, Get Yourself Tested: Frances is lucky. She could have easily been one of the 25% of stroke victims who only discover their silent A-Fib after having a stroke. Everyone 65-years-old or older, should be tested for silent A-Fib.

Sleep Apnea: Most EPs today will insist you get tested for sleep apnea before performing a catheter ablation. Why? Patients with untreated sleep apnea have a greater risk of their A-Fib reoccurring even after a successful ablation. Also, for a lucky few, just getting rid of sleep apnea restores them to normal sinus rhythm (NSR). To learn more, see Sleep Apnea: When Snoring Can Be Lethal

CardioInsight ECGI/ECVUE System: The CardioInsight ECGI/ECVUE mapping system is probably the most significant, game changing improvement in mapping A-Fib, particularly for people with persistent A-Fib. To learn more, see Bordeaux New ECGI Ablation Protocol—Re-Mapping During Ablation.

FREE 12-page Report

Frances’ O.R. Report: Using the CardioInsight system, Dr. Reddy found 5 A-Fib drivers in Frances’ atria. (In typical persistent cases, 4 driver regions are usually identified. 7 drivers is the maximum found in more difficult cases.) (For you technical types, the 5 A-Fib drivers were found: at the base of the Left Atrial Appendage (LAA), the Ostium of the Coronary Sinus (CS), the posterior Left Atrium (LA), the Right Atrial Appendage (RAA) and the lateral Right Atrium (RA).)

When Dr. Reddy ablated at the base of the LAA, Frances’ A-Fib terminated. (That’s the ideal result when A-Fib terminates during the ablation.) But then Dr. Reddy checked to see if there were any other regions in her heart producing A-Fib/Flutter signals. By pacing her heart, he was able to induce Atrial Flutter (CL 380msec). Using activation mapping, he found the re-entry atrial flutter circuit was coming from the anterior inferior RA. Ablating this area terminated her Flutter.

For more about O.R. reports, see my free report: How to Read Your Operating Room Report.

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