The View from the Mountain: My Journey with Atrial Fibrillation

Rob LandisJanuary 12, 2023

This article is about my experience with heart arrhythmia.  I wanted to reach out and share my experience because, surprisingly, heart rhythm issues are quite common in endurance athletes. I am sure some of you who are reading this have your own stories to tell. Studies suggest that endurance athletes are up to 5 times more likely to develop a heart arrhythmia. The longer you train and the older you get, the greater the risk factors.

To put this into perspective, data collated from recent well-regarded studies on athletes and atrial fibrillation suggests that of the 1540 male finishers over 40 in the 2022 American Birkebeiner potentially 94 could be experiencing or have experienced a heart arrhythmia. (I am focusing on men because, although heart arrhythmias are not unheard of in women, the prevalence is much lower).  Identifying undiagnosed arrhythmias is important because the longer they go untreated the more likely they are to become chronic and cause additional serious health issues. I am not a physician and this is not medical advice.  Instead, my hope is that by telling my story I can shed some light on this issue and help both others and myself recognize when they might be experiencing a heart arrhythmia and to face the challenges it presents in a positive manner.

I have always been an endurance athlete.  Sometimes a good one and other times a weekend warrior.  I have had some success as an ultra runner and nordic skier, and I make my living as an outdoor educator, wilderness guide and Nordic coach with the Sun Valley Ski Education Foundation.  It’s a rare day when I don’t get out the door and get my heart rate up in the mountains.

It is safe to say that daily time in the mountains running, skiing, climbing, or paddling is woven inextricably into my existence and without it I am not sure I could survive.  I imagine that if you are reading this you can relate.  I am 66 and have been scaling down my work commitments. I am looking forward to having the time to actually train again.  Perhaps see where that might get me at world masters, or maybe ski some of the iconic ski marathons or great ski traverses in the Alps. Last spring I was leading a group of 8th graders on a wilderness trip in Southern Utah and I found myself coming off the back of the group.  Thank god for the one really slow kid or I would have been dropped.  On the drive down I noticed my heart rate was pretty high and I just felt anxious.  This was weird but I thought I should just train a little harder and maybe eliminate a few beers.  A week after I returned my thumb became infected and I went to urgent care to have it taken care of.  When the nurse took my blood pressure she gave me a look and said, “Your heart does not sound right. Let’s see what the doc says.”  What the doc said was that I was experiencing atrial fibrillation, or A-fib, a condition where your heart does not beat in a coordinated rhythm. I was floored, and knew enough as a Wilderness EMT and CPR instructor to be pretty concerned.  I had always thought that every time I went out to exercise and ate well, I was putting another brick in the health fortress that would keep me hale and hearty into my old age.

 

I don’t want to get too deep in the cardiac weeds, but a little about how the heart functions is warranted. The heart has four chambers, the left and right atrium on the top and the left and right ventricles on the bottom.  Deoxygenated blood from the body enters the right atrium and is pumped to the right ventricle. Blood is then pumped to the lungs to be reoxygenated and then to the left atrium and ventricle which pumps it out to the body.  All four chambers of the heart must pump in a precisely coordinated rhythm for the heart to function effectively.

The coordination of the heart muscles is controlled by the sinus node, which sends out electrical impulses that propagate from heart muscle cell to heart muscle cell.  It is when these electrical impulses are disrupted, or hijacked, that fibrillation, or rapid uncoordinated muscle contractions, occurs.  When this happens in the atrium it is called atrial fibrillation. While ventricular fibrillation is a life threatening emergency, atrial fibrillation is a more subtle beast.

If you are an athlete, you are most likely tuned in to your body and what is normal.  According to the authors of “The Haywire Heart” (a must read for A-fibers) red flags are racing heart, or chest pressure or pain, labored breathing, palpitations, fatigue, persistently low power, and irritability.  How did it make me feel?  Well crappy – tired, irritable, unable to go even a little hard without feeling like I was going into oxygen debt. I struggled to run a 36 min 5K and felt like I was in level 4 the whole time. (This was slower than my 10K PR.) My heart rate was all over the place, and I was anxious and worried. In retrospect, it was clear that something important was not right, but I just thought I was coming down with something and would snap out of it.  I also replaced the batteries on my pulse-Ox because the readings couldn’t be right. Could they?

The most immediate risk of A-fib is stroke. When your heart does not beat in a coordinated rhythm, blood clots can form in your heart. If they travel to the brain there is an elevated risk of stroke. As part of my professional certifications I participate in first aid refreshers with scenarios and I have noticed as I get older that I am often profiled:  “Ok Rob you will be the rescuer that has a stroke during the scenario–think you can sit there and drool for an hour?” It is not the way I want to go out.

The doc at urgent care gave me a prescription for blood thinners to guard against blood clots and told me to make an appointment with a cardiologist. I did see the cardiologist, but also started my own research on the subject.  I was lucky enough to see a Washington Post article on A-fib and athletes, which led me to the book “The Haywire Heart” by Case, Mandroia and Zinn.  Another book I will plug is “The A-Fib Cure” by Day and Bunch. The more I learned, the more depressed I became, and the more I understood that this was something I would need to manage for the rest of my life.  I am going to throw a few nuggets from these books at you and you can be depressed with me.  According to The A-Fib Cure:

 

“14 percent of people who are diagnosed with A-fib pass away within a month of diagnosis and one in four patients over 65 diagnosed with A-fib are dead within a year”  Yikes!, the medication options have a long list of side effects, increased risk for other debilitating conditions and a substantially reduced quality of life, “40% of people with A-fib show visible brain damage, (I am also sure this would be true for many ultra runners) and are more likely to report declines in their satisfaction at work and home, a decrease in enjoyment of leisure time, a reduction of social activities, and a drop in the satisfaction of their sex lives.”

 

Here is the unexpected thing about A-fib.  There are two distinct cohorts who have an elevated risk for A-fib.  By far the largest comprises people in poor health and the elderly. The other, as I mentioned above, is endurance athletes.  According to studies cited in The Haywire Heart, endurance athletes are up to five times more likely to develop A-fib – not just at my age, but often in their 30’s and 40’s.  Many of these studies and meta analysis of studies were conducted on Nordic skiers in Norway and Sweden. The good news, I guess, is that endurance athletes are in a far better position to be able to manage A-fib and continue a rewarding and fulfilling life. The bad news is that it means a recalibration of expectations and often the loss of dreams.

The Haywire Heart by Lennard Zinn, Dr. John Mandrola, and Chris Case, is available for purchase at Amazon and other booksellers.

For many athletes a diagnosis of A-fib is a dagger straight into the core of who we are and what is important to us. The thought of not being able to ski, run, compete or train is devastating, almost unthinkable.  As The Haywire Heart bluntly puts it, you feel “downgraded from a thoroughbred to an invalid, and have to face the fact that you can “never do what you used to do in the same way you used to do it.”  It’s pretty hard to get your head around.  I have always been relatively healthy, so suddenly being swept into the medical maw and the loss of agency that goes with it was frightening for me.  So of course the only logical course of action was denial.

Last summer my heart stopped twice and in one instance I stopped breathing.  I will come back to this but for now let’s back up a little and I will explain how I got there.  After a month of taking blood thinners my cardiologist scheduled a cardioversion for me.  Essentially, this is a defibrillation or a calibrated shock applied to your heart in an attempt to reboot your heart into a normal sinus rhythm.  Anyone who has watched Grey’s Anatomy has seen a defibrillation done many times. I just knew that the cardioversion would be successful and I would tweak a few things in my life and that would be the end of it.  The cardioversion was successful. This by the way is when my heart stopped – totally part of the plan, and when I stopped breathing for a short period, definitely not part of the plan.  It was so wonderful to have my power back but I still was super conservative with my activity.

Two weeks later I was back in A-fib.  So we scheduled another cardioversion and that was also successful – this time with no drama.  In addition, the doc prescribed two medications to control heart rate and rhythm.  The meds worked to maintain a normal rhythm but the price was pretty steep.  For me the main effects (nothing side about them) were fatigue, brain fog, and loss of motivation, which pretty much took all the joy out of exercising or spending time outside.  Moreover, the medications only offered a fifty-fifty chance of maintaining a normal rhythm for a year. For the first time in my life I was having trouble motivating myself to get out of bed in the morning.  After moping around for a few weeks, I made a decision to put on my big boy pants and force myself to get out the door every day, even if it was just for a 20 minute walk.  Moderate exercise is my chicken soup and really good for almost anything. Getting your heart rate up is not a risk for A-fib patients as long as you are not planning killer intervals. (Even so make sure to check in with your doc on how much activity is appropriate)  So I pushed myself out the door most days and I felt better even to the point of starting to think sometimes I could live with this.  As Bonnie Rait sings, “When it comes to matters of the heart there is nothing a fool can’t get used to.”

Meanwhile I kept educating myself about A-Fib and the treatment options.  I knew I didn’t want to spend my life on these medications, walking on eggshells waiting for the next bout of A-fib.  I can’t tell you how empowering it was for me to start learning about my condition and the options for treatment and their efficacy.  As the authors in The A-Fib Cure write: “If you don’t arm yourself with knowledge and advocate for yourself with feisty resolve, chances are quite good you’ll just be prescribed medications to slow your heart and thin your blood and sent on your way.” This was precisely my experience.  My cardiologist made no attempt to discover what was important to me and what I was willing and capable of doing and basically prescribed medication and sent me on my way.  When I brought up the subject of medication on a follow up visit and expressed how much they impacted my quality of life, his dismissive comment was “well it’s better than a heart attack”  (This was weird because heart attacks are not a primary risk of A-Fib).

To be fair, I can’t really blame the cardiologist for his approach given that endurance athletes are a pretty rare breed – especially ones that play for the AARP team. On this subject the authors of The Haywire Heart write: “One of the drawbacks you may face in your exam is the fact that most doctors have little experience with a full fledged endurance athlete.  If you have trained for hours and hours, months on months, years on years, or if you compete in races you are special.  Your heart and mind and body have undergone adaptations that most doctors don’t regularly see,” and also note that “ People who are willing to commit to change their life and optimize their lifestyle are sort of like unicorns.”  For serious athletes however this type of discipline is SOP.

In Being Mortal, Atul Gawande’s amazing book on treating serious illness and end of life care, he makes the case that modern medicine is incredibly effective in treating serious illness but seriously lacking in determining what is most important to a patient and what scares or concerns them the most.  It is these affective aspects of patient care that should inform treatment decisions as much as the medical ones.  Applying these concepts to the treatment of A-fib in endurance athletes means we may make different choices and take certain risks so that we can continue to honor what is important to us.  Finding a doctor who would take the time to discover who I was and what my goals were, and collaborate together to make responsible, intelligent choices going forward became crucial.  Interestingly enough, this doctor ended up being my long-time GP, who had been my doctor for almost 30 years. He listened to me and we collaborated on a strategy going forward. (Small towns are great)  The strategy we settled on given my relative health, willingness to change what I needed to in my life, and my increasing dismay with the pharmacopeia I was on, was an ablation.

An ablation is a surgical procedure where the surgeon inserts a catheter into your femoral artery at groin level and navigates it into your heart.  On the end of the catheter is what is essentially a radio wave burner.  Targeting the areas most likely to be generating the rogue electrical signals responsible for the fibrillation, the surgeon proceeds to burn the cells in that area creating a firewall that prevents rogue signals from disrupting your heart rhythm. It is often done as an outpatient procedure but, make no mistake, it is a pretty serious deal with real risks. Not to be undertaken lightly.  It is important to note that ablation is not always successful and many patients need to repeat the procedure. Long term success with the procedure is greatly enhanced by doing all the many things to keep your heart and self healthy.  Hmm…. kind of sounds like a successful training plan–attention to detail and doing all the big and little things well.

I was able to schedule the procedure for October. Unfortunately, as you might recall, everything I am relating to you here was happening under the backdrop of a global pandemic.  In Idaho, with all our freedom loving unvaccinated friends, the delta variant was overwhelming hospitals forcing authorities to institute crisis standards of care which shut down any elective surgery. This actually worked out well as I was able to schedule a surgery in Utah with Dr. Jared Bunch, one of the authors of “The A-Fib Cure” and definitely the A team. The rest of the title of the A-Fib cure is: Get Off Your Medication, Take Control Of Your Heart And Add Years To Your Life.  Music to my ears. (When I asked him about the book title he was a little sheepish, noting that you don’t really cure A-fib but manage it.) Long story short, ablation in December, off all rate and rhythm medications in March, and so far so good.  I was able to put over 100 days on my skis last winter and guide a full slate of winter and spring trips. Going forward I hope to discontinue almost all of my medications within the next few months.  I am employing a “pill in the pocket” approach which means I have a supply of heart rate and rhythm medications ready to use if I have a bout of A-fib. The medication stand down is conducted with periodic monitoring of key markers which, in collaboration with my doctors, will determine if it is working.  Another tool for monitoring is my smart watch which has an ECG feature–but I have to say that once I knew how it felt, A-fib was not subtle.  A simple evaluation of my pulse rate and rhythm made it pretty clear when I was in a normal rhythm – or not.

As I write this it’s June in Idaho and I am several months past a year since my initial diagnosis.  To quote Elton John, I’m still standing.  It is achingly beautiful in the mountains right now, the kind of beauty that can make you a little weepy and I am beyond grateful to be able to get out there everyday.  Am I cured?  I am not sure this is the right question.  The specter of A-fib is still lurking and I know I will never regain the rock solid belief in my health and fitness that I had.  My life has changed and managing A-fib will forever be a part of who I am. The better question for me was how has my life changed and, going forward, can I make the totality of those changes a positive.

The authors of The A-Fib Cure contend that if you can embrace the lifestyle optimization strategies that managing A-Fib without meds requires then A-fib can “help you live a longer,  healthier, happier, life in every way.”  I have to admit that initially I scoffed at this assertion because quite frankly A-fib sucks and it is debilitating both physically and emotionally.  But lately, I have been coming to see the wisdom of their view more clearly.  It is also interesting because I see a clear connection between managing A-fib and managing the aging process – something that I and I suspect many other older athletes struggle with. From what I have learned and my personal experiences in the last year I have come to believe that the changes in habits and outlook needed to manage A-fib effectively are just plain intelligent lifestyle and training choices for anyone, especially for the aging athlete.

So on to the elephant in the room.  Will I ever be able to train hard and compete again?

What triggers bouts of A-fib? Well, age and poor health, which encompass a litany of issues. But also stress, both physical and emotional. Most medical professionals will agree that a small or moderate amount of stress is actually good but too much stress negatively impacts your health and well-being. (A caveat:the research support for stress as a major trigger for A-fib in endurance athletes is not conclusive. There is a strong correlation between overstress and A-fib, but correlation does not prove causation.)

The Haywire Heart authors define the training stress that endurance athletes who develop A-fib are willing to put themselves under as a “highly elevated level of exercise that is not only extremely intense but often competitive and performed for years, if not decades.”  So where training is concerned I realized that I really needed to train smarter not harder, carefully controlling both the intensity and duration of my workouts.  This is not only important for managing A-fib but makes perfect sense for aging athletes who want to stay off the injury list. As for competing I am not quite there yet, but one strategy I find interesting is to set your heart monitor so you can regulate your heart rate during races and not overstress.  Some athletes who have employed this strategy in races credit it with finally learning how to pace their race well and actually have improved results.

Another issue I have struggled with even before A-Fib was fear of results, or the “if I am not ready to do well I don’t want to race or even sometimes go for a ski with my competitive friends syndrome.”  I just have to get over it because whether I am racing or just participating it is too much fun to miss. Other things that fall under the heading of training smarter involve targeting better sleep, improving diet (although my wife Amy and I have always enjoyed cooking really good food),  losing those pounds I have been talking about for years, and working on core strength and flexibility. Indeed, a study conducted at the University of Kansas Medical Center found that “yoga can reduce a person’s A-fib burden by a whopping 24 percent. The same study found tremendously positive impacts on blood pressure, anxiety and depression among patients with A-fib.”  I have also found that being kinder and more forgiving with myself and not sweating it when I need to take a day off or truncate a workout has really helped the runs and skis I do to be more rewarding and effective.

In addition, I have focused more on taking better care of myself. As we age our immune systems need all the help we can give them.  For me this includes keeping my medical world in order, regular check ups, getting flu shots and vaccinations, wearing a mask, dealing with blood pressure and cholesterol and also taking my own coaching advice by staying well hydrated and having dry clothes and a snack ready for the end of each workout.  Getting sick not only puts a hole in my training or competitive schedule but is potentially a trigger for a bout of A-fIb.

Lastly, I want to mention alcohol. Everything I have ever read on managing A-fib recommends avoiding alcohol. Through the years my relationship with alcohol has been a little like the frog in the pot story.  I really love to have a glass of wine on the deck in the evening, and if I don’t pay attention then I wake up one evening to realize I am having one or two or three glasses of wine every night. (The great Italian skier Maurilio DeZolt who won a Silver Medal at the 1992 winter olympics in the 50K at the age of 42 is reputed to have consumed a full bottle of red wine each day)  I can’t claim I have eliminated alcohol but my compromise is to limit it to special occasions and those few times where I just need to sit on the deck and have a glass in the evening.  The carrot in this compromise is that when I do have a glass I can justify getting a really good wine well worth savoring slowly.  The silver lining of contracting A-fib that I initially scoffed at is that I became highly motivated and energized to live and train smarter and I believe that if I can keep my discipline I will be a better athlete and person for it.  I also want to emphasize the strong connection I see with managing A-fib and just plain smart lifestyle and training habits for any athlete.

In The Haywire Heart they write: “The most difficult component to life after heart malfunction, for many, is the psychological struggle.”  For me this is totally true and I have to admit that there were times when life and my outlook for the future seemed pretty dark.  I am not sure if I ever reached clinical depression but it was certainly new emotional terrain for me.  When I have had a close call with injury or death – a close encounter with an avalanche, a scary  fall on a rock climb, an auto accident, a heart condition, or a similar issue with a loved one or a friend – it has often brought me a moment of clarity where the trivial gets swept away and what is really important becomes clear.  It is a time to stand on the mountain top and survey the topography ahead, to get out of your head and see the bigger picture.  The moment of clarity offered by my experiences with heart malfunction and my belief that managing stress is a critical part of managing A-fib have led me to re-emphasize aspects of my emotional life and there is no question they have made my life better. I am also again struck by how so much of what I have related are things we might suggest for a struggling training partner or an athlete we are coaching.   Those of us who have worked with athletes know that having the emotional part of your life in order is as important as the physical if you are to train and compete well.

I have long understood that feelings of entitlement lead to dissatisfaction and unhappiness and feelings of gratitude lead to happiness.  After I got over the why me phase of my diagnosis I really began to work on my gratitude muscle and it has been a blessing. Never again will I take for granted my amazing family, the beautiful place I get to live in, the meaningful work I get to do, my friends, or that perfect extra blue day on the trails. The wonder and awe I often feel when I am out in the mountains is back and stronger than ever.  As I often say to my children, I am a fortunate man – and I truly believe it.  I have also put a lot more emphasis and energy into my key relationships and being vulnerable.  Nothing determines more how my life is going more than how things are going with my family. This is not a repair project but a “let’s see how good we can make it project.” I also would note that I believe that allowing myself to be more vulnerable has made me a better more empathetic coach and guide.  I am also working on keeping the glass half full.  It has been a struggle to be positive some days but I know it is important.  According to the A-Fib Cure authors: “ If you want to send A-fib into remission and keep it there an optimistic mindset is a force multiplier.” Giving back makes me happy.  For me this involves doing things that keep me connected to the things I love.  Like sharing my love of wilderness travel with others, volunteering at local ski races, running an aid station at an ultra run, working to become a technical delegate. The possibilities are many

Densians at a wilderness aid station for the Standhope Ultra Challenge

My mantra lately has been: control what you can control, Robert,and let the rest go. Lastly, a few grab bag items that I have found to be helpful.  Maximizing hugs, (because you never know when another pandemic will shut this down) minimizing the news cycle, listening to a lot of Mozart, eating some of Amy’s strawberry rhubarb crisp and petting the dog.

Phew!  For those of you who are still with me I hope that this has provided some insight. Certainly writing this has been cathartic for me. I want to repeat that none of what I have written should be taken as medical advice.  I have always believed that training every day was the main meal and competing just the dessert. As coaches the obvious goal is to help your athletes learn to ski fast, but the ultimate wish is that every skier who you coach develops a lifelong love of skiing and the Nordic lifestyle. Time to heed my own advice.  After a lot of angst and feelings of loss I am slowly coming around to the belief that I may not have to give up all my athletic and competitive aspirations but for sure recalibrate how I approach them. What’s funny is that they don’t seem that important anymore. The view from the mountain top was unambiguous. If I can get out the door most days into the mountains and be surrounded by the love of my family it is more than enough and I am at peace with it.  See you on the trails.

Rob Landis

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