I am writing this on the one-year anniversary of my successful afib ablation. When I was suffering with atrial fibrillation I read every “testimony” I could find looking for hope. My story is one of hope and recovery, and it is my intent to inspire others who are dealing with this debilitating condition to seek treatment, and to not accept that AFib is something you must live with. In addition, I apologize in advance for the length of this testimony, but I have included details and reflections that I feel are important to others seeking answers.
Jump Ahead To:
I recently turned 65, work full-time as a project manager at a science/engineering consulting firm, and live in the Tampa, Florida area. I have been somewhat of an endurance athlete for most of my life, logging over 6,000 hours of training time as a runner and cyclist. I am by no means a Master’s champion, or anything like that, rather, I am just a guy who has enjoyed staying fit and “competing” in local events.
Other than sport injuries, I have generally been very healthy my entire life. Of significance, my father was diagnosed with AFib in his early 50’s and lived until age 73 in persistent AFib. He was prescribed digoxin, which he was on for decades. He died in his sleep in 1989 of unknown causes, but his death certificate said that it was a possible myocardial infarction (heart attack). To my knowledge, he was never diagnosed with heart failure.
AFib Onset and Progression
When I was in my early 30’s I experienced an episode of pronounced ectopic beats that pretty much came out of nowhere. I was having one or more pre-atrial contractions (PAC) every few minutes, with the skipped beat sensation and the hard “thunk” of the recovery beat. This episode lasted maybe 10 days and was disturbing enough that I made a doctor appointment.
By the time I got into to see the doctor, the episode has pretty much run its course. He put me on a Holter monitor for a week or so and did see a few PAC’s, but he said that they were normal and there was nothing to worry about. I then went the next 30 years of my life without experiencing any type of arrhythmia.
My first recollection of an AFib event happened in May 2016, when I was 61 years old. I recall waking with a noticeably irregular and rapid heartbeat, and had trouble catching my breath. My normal resting heart rate (HR) was about 54 bpm, but this morning my HR was about 80 bpm. Since I had been out the night before with friends drinking beer, I chalked it up to too much alcohol and not enough sleep.
I went for a 20-mile bike ride and about halfway into the ride, my HR just dropped back into sinus rhythm. I know because I always train with a heart monitor, and I plotted the chart of that ride. I went another 6 months without any episodes, but then I had two similar events in October 2016. I tried to “ride off” the arrhythmia as before, but it didn’t work, and I found it very difficult to exercise while in arrhythmia. Both of those episodes lasted about 4-6 hours and self-terminated.
On New Year’s Day of 2017, I again awoke in arrhythmia – again after a night of partying. That event also lasted 4-6 hours and self-terminated. In May 2017 I had my annual physical exam with my general practitioner (GP), and I mentioned these episodes to him. I had been doing some research on my own and had pretty much concluded that I was experiencing paroxysmal atrial fibrillation. He did an ECG in the office and said that it looked perfect; but he also said to call him the next time it happened so that he could maybe catch it on an ECG.
Three months later, in August 2017, it happened again on a Friday. I called my GP, and he said to come in Monday morning if I was still in arrhythmia. This episode persisted through the weekend, and into Monday when my GP did another ECG. This time he said that I was definitely in “some sort of an arrhythmia.” I asked him if it looked like AFib and he said he didn’t know for sure, and that I needed to see a cardiologist for a diagnosis.
He prescribed Diltiazem and aspirin and said that the Diltiazem would probably bring me out of it in a few days. That episode lasted almost an entire week. Thus, began my long AFib nightmare.
I made an appointment with the cardiologist recommended by my GP and got in to see him in early September 2017. He did a full cardiac workup, including an ECG, an echocardiogram, and a stress test with barium dye to check for any restricted blood flow around my heart. He said the ECG looked fine, but he was going to prescribe 3-weeks of 24-7 HR monitoring. I wore the monitor for three weeks, including during workouts, and never had any arrhythmia during that time. I went back to see him again in late September, and he pronounced me to be heart healthy.
He said that the stress test showed no blockages, my valves were normal, and the monitor picked up no AFib. However, he said that my echocardiogram showed bi-atrial enlargement, and an aneurysm of my aorta root. While I was happy about some of this news, the issues with the echocardiogram were very disturbing. He said that I didn’t need to take the Diltiazem, but he recommended that I continue with one 325 mg adult aspirin per day as an anticoagulant just in case I had any more AFib occurrences.
Four months went by with no more AFib episodes, and I began to just forget about it. Then in mid-January 2018, while traveling on business, I had a really bad AFib attack. I had gone out for dinner with my project team and had several drinks and a big meal, and then went back to my hotel room to prepare for a major meeting the next day. About 9 pm, while lying in bed, my heart suddenly shifted into another gear, with a very rapid and irregular HR. For the first time I had the sensation of the fish flopping in my chest. I called my wife and she said to take a hot bath and try to relax, which I did – but it didn’t help. I was filled with anxiety and hardly slept that night.
Somehow, I got through the meeting the next day, with my AFib raging, and then drove 5 hours home. While driving I called my cardiologist and asked if I could come in the next day. He slotted me in for an afternoon appointment, and I was still in AFib when I arrived. He did an ECG and confirmed the diagnosis, and that my “resting” HR in AFib at that time was about 120 bpm. He prescribed Flecainide (50 mg 2x/day) and Xarelto and said that I needed to see an electrophysiologist (EP).
He explained that treatments for arrhythmia had come a long way since my father passed, and that ablations offered a cure for some patients. He said that there were several good EP’s in the Tampa area, and recommended one that he thought I would like that worked out of a hospital near my home.
The Local EP
I called the referred EP to set up an appointment, but his office said it would be 6 weeks before I could get in to see him. I took the first available appointment. Meanwhile, my AFib event lasted for about 4 days, and either self-terminated or was stopped by the Flecainide, which I had just started. Two weeks went by, and then the Saturday before the 2018 Super Bowl I went for a 20-mile bike ride.
I felt fine while riding, with no arrhythmia. After finishing I sat down with a cold bottle of water and took a big swig, and my heart immediately jumped into a horrendous AFib attack, worse than ever. I rode a few short blocks home and told my wife I was in big trouble. She put her ear to my chest and said that she was taking me to the emergency room.
They admitted me and immediately hooked me up to a Diltiazem IV drip. It took about an hour to get my resting HR down to about 130 bpm, but they couldn’t extinguish the AFib. A partner in the EP practice that I had been referred to was on call that weekend, and he told the emergency room staff to admit me into hospital bed for the night and to continue the Diltiazem drip. He would not authorize a cardioversion without seeing me first.
I spent a sleepless night in the hospital, and stayed in AFib all the next day, albeit at a lower HR. The on-call EP finally showed up about 4pm and administered 300 mg oral dose of Flecainide. Within 30 minutes my AFib was gone. He said to continue with the lower daily dose of Flecainide, but if I had another attack it was OK to take the 300 mg “pill in the pocket” dose. I watched the Super Bowl in the hospital and was discharged the next day.
A week went by and I had another attack on a Friday night. I took 300 mg of Flecainide, but it didn’t work this time. On Saturday afternoon I called the local EP’s emergency number, and he called me back about 9 pm. He said to take one more 300 mg dose, which I did, and on Sunday morning my AFib was gone. I had two more attacks like this over the next four weeks before I finally got in to see the EP in early March 2018. He looked at my test results from the cardiologist and said that my AFib progression was still in its early stages, and that I could benefit from an ablation.
I asked about his experience with the procedure, and he said that he had performed about 300 cryoablations, and that his “success rate” was about 50%. That didn’t sound very good to me, so I asked him what constitutes a successful ablation. He said that about 50% of his patients require a second ablation within one year; and of those patients, about 70% remain AFib free for several years. He said he could get me in for an ablation within about two weeks, but I said I wanted to do some more research on my own before committing to anything.
Depression Sets In
Leading up to, and after, my appointment with the local EP, I was doing a lot of internet research on atrial fibrillation and ablations. In fact, I had become obsessed with the subject, and worried incessantly about the bad things I was reading. Most troubling were: 1) all AFib drugs eventually stop working; 2) AFib is a progressive disease, and once you get it you are destined to end up with persistent or permanent AFib; and 3) ablation technology is relatively new, the success rates are not very good, and the risks are significant. Taken together, these points painted a very pessimistic future for me.
During this time, I began to sink into a pretty serious depression. The stress of dealing with more frequent and more intense AFib attacks while carrying on in a high-pressure job was bad enough. However, I also believe that the negative pharmacological mood effects of Flecainide also contributed to my deepening depression. I was anxious most of the time and was sleeping very poorly. Worst of all, I actually began to have fleeting suicidal thoughts, which was very scary.
I went back to my GP and he prescribed Ambien for sleep, Xanax for anxiety, and Lexapro for depression. In a few short months I had gone from a healthy, happy, athletic guy on zero medications, to a nervous wreck now on five medications. The Lexapro took about a month to start working, and I slowly started to recover my emotional resilience.
During this time, I also discovered the Living with Atrial Fibrillation website, which presented a more optimistic tone. I reached out to Travis, the owner of this afib blog, via email and he was very kind and supportive. He offered to connect me with his friend Shannon, who had a long history with AFib, both as a sufferer and a patient advocate. Shannon is the owner of the Afibbers.com website.
He has acquired a depth of knowledge about AFib and ablations that equals or exceeds that of most EP’s. I was able to talk with Shannon on the phone and he was very encouraging about my future and recommended that I seek out a more experienced EP if I had good insurance and was willing to travel for the procedure. He explained that the success rate of ablations really depends on the experience of the EP, and that it is as much of an art as it is a science. When pressed on who I should see, Shannon recommended Dr. Andrea Natale at the Texas Cardiac Arrhythmia (TCA) clinic in Austin, TX.
Ablation No. 1
Fortunately, Dr. Natale was in my insurance network; however, his next available ablation date was not until July 19, 2018, still a long four months off. I took the appointment and began to feel hopeful for the first time in months. During the months leading up to my ablation, I recovered from my depression, was sleeping a little better, had less anxiety, and was cycling somewhat regularly again, albeit much more lightly than before.
The Flecainide seemed to be holding my AFib in check most of the time, but I hated the sluggish way it made me feel. It seemed to lower my resting HR, but when I exercised my heart felt jumpy, like it was on the verge of AFib.
My wife and I flew to Austin on a Sunday, met with the TCA staff and Dr. Natale on Monday, had the ablation procedure on Tuesday, and was discharged from the hospital on Wednesday. I will not go into detail about the procedure other than to say that it was scary as hell, but there was little very pain or discomfort. When I awakened from the anesthesia, I was in sinus rhythm and my chest was a little sore. Otherwise, I felt pretty good, and I had no problems at all with the catheter insertion points.
Compared to my rotator cuff repair, the ablation was a walk in the park. After the procedure Dr. Natale came in to visit. He is a gracious but subdued man. He said that my procedure went well, and that he didn’t see any fibrosis in my atria. He did a basic pulmonary vein isolation (PVI) using radiofrequency ablation and did not have to ablate any other focal sites. I was under anesthesia for only about two hours. I was directed to stay on Flecainide and switch from Xarelto to Eliquis.
By the weekend I was feeling pretty good, although I was still having fairly frequent and intense PAC’s. The following week I traveled on business to attend a professional conference and present a paper. I felt good enough to mingle with colleagues and party a little; however, I caught some sort of a respiratory virus, and a few days later I had a sore throat, a raspy cough, and a fever of 103.
Exactly two weeks after my ablation I went into a pretty bad AFib episode that lasted about 12 hours. Being in AFib with the flu was truly a miserable experience. The next day I called Dr. Natale’s nurse and she said that catching the flu that soon after an ablation can inflame the heart and trigger an AFib attack, and that it should calm down as I recover. Unfortunately, it didn’t turn out that way.
After I recovered from the flu, I continued to have what felt like AFib events about every two weeks, with each event lasting days at a time. I was still early in my blanking period and was sending in weekly ECG recordings through the telephone to Dr. Natale’s nurse. She said that the recordings indicated atrial flutter, not atrial fibrillation, and that this type of arrhythmia was common following an ablation.
To me, it felt indistinguishable from AFib. This pattern persisted for the next two months. Dr. Natale’s nurse also kept telling me that this was normal during the blanking period, but I stopped believing her. In late August I had a particularly bad episode, so I called my local EP and he saw me the next day. He did an ECG and said it was not clear if it was atrial fibrillation or atrial flutter, and that my “resting” HR was bouncing around 120 bpm. He scheduled me for a cardioversion the next day.
I showed up at the hospital the next morning with my wife, and as they were prepping me for the cardioversion, I suddenly went into sinus rhythm. The EP came in and told me to stay there for another hour or so to see if I stayed in sinus rhythm, which I did. When the EP came back and said I could go home. While driving out of the hospital parking lot, I again went into the same arrhythmia. I called the EP and scheduled an appointment with him the following morning.
At my appointment he said that Flecainide can sometimes exacerbate atrial flutter after an ablation and recommended that I discontinue taking it. He also said it was kind of futile to do a cardioversion while I was still in this on again off again pattern. When I left his office, I called Dr. Natale’s nurse and told her what my local EP recommended. She conferred with Dr. Natale and called me back and said that Dr. Natale agreed that I should stop taking the Flecainide. I scheduled an appointment with Dr. Natale in Austin in November, four months after my initial ablation.
Ablation No. 2
After discontinuing the Flecainide my atrial flutter episodes became less frequent and shorter in duration; but I was still having them every 2 weeks or so, and they were lasting 1-3 days. My life was still a mess. At my appointment Dr. Natale said that he didn’t know why I was still having arrhythmia, and that a second ablation was necessary to find out what was going on.
He speculated that he may have to ablate my left atrial appendage (LAA), as this small pouch on the side of the atrium is sometimes a source of erratic electrical activity that causes AFib. He said that ablating the LAA usually results in the loss of its ability to contract with each heartbeat, thus increasing stroke risk. Mitigating the increased stroke risk would require that I take anticoagulants the rest of my life, or a follow-up procedure to install a “Watchman” device that occludes the LAA and prevents blood from entering and pooling there.
We scheduled my second ablation for February 4, 2019, but both my wife and I left Austin feeling scared and demoralized about my future.
I continued to have AFib/atrial flutter episodes on and off through the holidays, and my last one ended on January 4, 2019, exactly one month before my ablation. We flew to Austin on Sunday, February 3, and I had my second ablation the following Monday. As with my first ablation, the procedure was not painful, and I had no complications with the catheter insertion points. When Dr. Natale came to visit with me later that day he said that he found electrical activity entering my atrium from one of my pulmonary veins, and that his first PVI had not been successful.
He “touched up” that area and ablated a few focal spots on my coronary sinus and atrial wall. He also tested my LAA for electrical activity and found none; so thankfully, he did not ablate that area. I was under anesthesia for about 1.5 hours. Although my chest was a bit more tender this time, my HR felt more “solid” and I was not having any PAC’s. I was directed to stay on Eliquis and was prescribed Multaq as an antiarrhythmic. I was discharged the next day, and we flew home on Wednesday.
After my second ablation, I took the entire next week off from work and just rested and did some easy dog walking. I avoided crowds, as was very diligent about washing my hands to avoid catching the flu or a cold. My recovery went very well, and within a month I was on the bike again doing some light cycling. Although I did have occasional PAC’s and very short “atrial runs” (2-3 seconds of rapid beats), I had no AFib or atrial flutter.
Dr. Natale’s nurse continued to review my ECG transmissions during my 3-month blanking period, and she said everything looked great. After my blanking period, I was told to discontinue the Multaq. Then I wore a continuous HR monitor for about two weeks, and again those results were perfect. In June 2019, four months after my second ablation, Dr. Natale’s nurse said I could discontinue the Eliquis. At last, I was AFib drug free!
In August 2019 I went back to Austin to do a follow up visit with Dr. Natale and to have an echocardiogram at TCA. I was elated when the technician told me that he didn’t see any atrial enlargement, and that my aorta root diameter was well within the normal range. He concluded that the echocardiogram performed by my first cardiologist was simply in error, as the reported numbers were way out of line with the normal range of measurements that he found.
Since then I have continued to just get stronger and healthier. I have lost 20 pounds, cut way back on alcohol, and am back to cycling 75-100 miles per week. I have had no AFib or atrial flutter whatsoever, and I feel like my cardiac performance is pretty much back to where it was before my AFib nightmare began. Every day without AFib is truly a blessing, I am so thankful to all those who helped me get through this very challenging period in my life.
The most important lesson learned for me is that even though my ablations were performed by one of the best and most experienced AFib EP’s in the world, my first procedure was a failure. The first PVI burns were either incomplete or not durable. Shannon Dickson told me that it is rare for Dr. Natale to have a “failed” PVI, and he speculated that a normal level of ablation energy sometimes not be enough to create a durable lesion in athletic hearts that have “tougher” myocardial tissue.
I also learned that there is apparently a lot of variability in the skill of echocardiogram technicians. It is frustrating to learn that I worried needlessly for over a year about the potential for an aortic dissection, when in fact my aorta was perfectly normal.
I have thought a lot about why I developed AFib and surmise that there were multiple causes. First and foremost is my family history. My father was diagnosed with AFib in his early 50’s, and lived with it asymptomatically until he died, likely due to related heart issues. AFib is known to be strongly inheritable. I also think that stress, weight gain, blood pressure, and alcohol were important factors in my case.
At the time I first started have AFib episodes my mother was becoming ill, and she passed in April 2017. I was the personal representative for her estate, and this required a lot of my time. Simultaneously, I was managing a very stressful work project that required a lot of business travel, with drinks and big restaurant dinners most nights.
During this time my weight ballooned to 218 pounds (I am 6’1″), and my blood pressure started showing higher than normal readings. I tried to de-stress and keep my weight down by riding harder and longer on the weekends. Add these ingredients together and you have a perfect recipe for AFib.
I have also questioned whether all my cardiovascular exercise was a factor, and I have concluded that the jury is still out on that one. In his book entitled The Haywire Heart, Dr. John Mandrola, an AFib EP, examines this question thoroughly; and if you are an endurance athlete struggling with arrhythmia, I strongly recommend this book. I also discussed the role of cardiovascular exercise in my case with Dr. Natale. It was his opinion that it can be a factor in some extreme endurance athletes, but that my level of training was not harmful.
He said that excessive exercise will cause fibrosis in the atria, which can be detected during an ablation; but he noted that he saw no fibrosis in my atria. He recommended that I continue to exercise at the level I am comfortable with. Nonetheless, I am getting older and I am much more conscientious about getting adequate rest after hard training rides and competitive events, and not overdoing it.
Finally, I think it is worth noting that there are two types of AFib generally recognized in the popular literature: vagal and adrenergic. Vagal AFib events tend to occur when the body is winding down, resting and digesting; whereas, adrenergic AFib events tend to occur when the body is ramping up during exercise and/or stressful events that elevate adrenaline. My AFib events almost always started in the evenings after a big meal and/or alcohol; and on several occasions I was able to extinguish an AFib event by exercising vigorously.
Conversely, I have a friend – now AFib free for 9 years after a successful ablation – who’s AFib events almost always started during exercise or stressful events like public speaking, but never when he was winding down. He claimed that caffeine was a big trigger for him, but not alcohol. It was just the opposite for me. I don’t know if these two forms respond differently to various AFib drugs, but it seems likely that they would. Yet EP’s don’t seem to distinguish these different forms of atrial fibrillation.
Is an AFib Ablation a Cure?
I say why not! We still hear that there is no cure for cancer, yet millions of people have been effectively cured, or put into long-term remission, through new and evolving cancer treatments. I read somewhere that if after an ablation you are AFib free for five years then your risk of developing atrial fibrillation again is the same as the general population.
I’m not if sure that’s true, but I have since come to know several people – and have read testimonies from dozens more – who have had successful ablations and are AFib free for five years and well beyond. Why should we not consider them to be cured? Of course, I don’t know yet if I’m cured, but I feel like I am, and I very much want to believe it. I will be retiring next year, and I am committed to doing everything I can to ensure that I stay AFib free.