Reversal Agent for Eliquis and Xarelto Receives FDA “Fast-track” Approval

 

This is great news for people with atrial fibrillation (AF) who take the newer anticoagulants Eliquis or Xarelto. According to a recent article in Cardiology News the FDA, in early May 2018, approved Andexxa (Portola Pharmaceuticals), the first reversal agent for the popular newer anticoagulants Eliquis and Xarelto.

I think runners and mountain bikers, correctly, worry about problems with excessive bleeding while on anticoagulants because we are certainly at increased risk of falls or of being hit by a car, and many have hesitated to transition from warfarin (Coumadin) because of the lack of a reliable reversal agent.

Pradaxa (dabigatran) and warfarin both already have reversal available reversal agents.

Andexxa acts as a decoy molecule and essentially binds to the drug preventing it from interacting with clotting factors.

Terrific news, right?

According to drugs.com “In the U.S. alone in 2016, there were approximately 117,000 hospital admissions attributable to Factor Xa inhibitor-related bleeding and nearly 2,000 bleeding-related deaths per month.” 

But wait – there’s catch!

Andexxa has been approved but as the writing of this blog post (May 23, 2018) it is not yet available. It exists, but you can’t get it!

I called one of the pharmacists at our hospital (Sky Lakes Medical Center) and asked if it was going to be readily available at our hospital – that’s when I discovered that it wasn’t yet being distributed – but she told me that our hospital plans to have it in stock and available for use.

She also said that once Andexxa is actually available our hospital would then develop guidelines for usage of the new drug. These have not yet been declared but she expects that it will be similar for guidelines pertaining to the reversal agents for Pradaxa and warfarin which are 1.) Patients with serious, life threatening bleeding and 2.) Patients who need emergency surgery.

I think that means that people having elective surgery (like a knee replacement) will not be eligible and will have to taper off their anticoagulant and bridge with Lovenox, just like they do now. I imagine that emergency surgery refers to surgery that is necessary to save your life, not necessarily surgeries like fracture repair, where it would be possible to wait a few days.

As far as my personal experience – I take warfarin and don’t intend to change. I had taken Pradaxa for several years and was very happy with it until I had a mini-stroke and a trans-esophageal echocardiogram revealed that I had a blood clot in my left atrium.

The next big question, of course, is how much will Andexxa cost? I have no idea and I can’t find any information about cost – but I’m guessing it will be really expensive. But then again – people who are anti coagulated and have life threatening bleeding or need emergency life-saving surgery can just go ahead and get Andexxa and worry about how to pay for it later.

 

Any comments are appreciated! Thanks for reading.

Re A-Fib: 5 Things I’ve Learned in 10 years… A Guest Post by David Grayson Lees

runmoorepark

I’m a 64 year-old road/trail runner, marathoner and weight lifter diagnosed with atrial fibrillation more than a decade ago. I’ve had three ablations and as many cardioversions, plus I’ve swallowed the usual assortment of prescription meds. Now my a-fib has become paroxysmal atrial flutter—about one episode every two weeks or so, usually lasting a few hours—and while my running days seem to be over, I still regularly make it to the gym and I’m discovering the joys of walking and hiking.

Through trial and error—plenty of each, actually—as well as a fair amount of research, I’ve come to a handful of conclusions that may be useful. While I believe them to be true, keep in mind that my observations are true for me; your experience may well be different. Finally, since I’m not a physician, nothing here is intended as medical advice.

And now: 5 things I’ve learned in 10 years of dealing with the always-entertaining world of cardiac arrhythmia.

A-Fib won’t kill you…even though a diagnosis of a-fib—and its symptoms—can be very scary, barring underlying cardiac disease, a-fib is not inherently life-threatening. And so if you have just been diagnosed, relax as best you can.

…but a stroke could. Pay rigorous attention to your anti-coagulation regimen. Even if your CHAD score is zero, at least take a low-dose aspirin every day. Personally, I find Coumadin to be a true pain, what with blood monitoring, dietary restrictions and the like. I much prefer the newer meds, especially Xarelto. It acts quickly, and as an added bonus you don’t have to be continuously concerned with your INR numbers.

martinmiro

Your EP isn’t interested in prevention. Typically, EP’s are all about fixing stuff rather than prevention. Which is weird, because unless you’re on the younger side of 40 and/or your a-fib has been freshly discovered, one ablation usually won’t do the trick. Of course, I’m grateful to my two EP’s, one rated among the best in California and the other acknowledged as one of the best in the world. It’s just that neither one has ever expressed any interest in the contours of my life, including what my exercise habits happen to be, what sorts of supplements I take, or what my days are like. Now, I’m not looking for a new best friend, but it’s clear that for them I’m a unique problem to be solved rather than a unique human being. I’m not angry about it; after all, these docs chose a field in which their major interaction with patients occurs when the patient is unconscious.

Still, I believe the implication is clear: you are pretty much on your own when it comes to figuring out how to modify your life style, exploring vitamin/mineral supplementation, and gathering the latest non-nutsy information.

(BTW, in terms of info, two websites I recommend are Dr. John Madrola and The A-Fib Report. Dr. John is a younger EP who always has a thought provoking take on new developments in a-f treatment and research and The A-Fib Report is a readable compendium of international a-f research, written in lay language. It requires a nominal membership fee that’s well worth it.)

ringobrownmtn

Supplementation could work for you. I haven’t thrown out my beta blocker (Sotalol AF, not regular Sotalol) but along the way I have had excellent results in controlling the frequency and duration of my atrial flutter episodes by supplementing with 200 mg of magnesium citrate in a pill taken at lunch and ¼ teaspoon of potassium citrate dissolved in water taken in the morning and again at dinnertime (Please note: ingesting too much potassium involves some quite severe health risks, so be careful.)

Life is good. But first, the bad news: as near as I can tell, nobody knows what causes atrial flutter. The gang of suspects spans endurance sports (!) to mysterious biochemical mechanisms that somehow encourage the formation of tissue substrates that make the electrical system of the heart go haywire. Researchers—and your EP, too–are just guessing, leaning on statistical correlations rather than employing demonstrable causal connections. Maybe cutting out caffeine will help you; maybe it won’t. Maybe abstaining from demon rum will prove to be the answer; maybe not. Obviously, if you are over-drinking, over stressing (like many of us who are into enduro sports) under sleeping or happen to be engaged in other deleterious deeds, changing your behavior is simply a good idea, a-fib or no a-fib. Just don’t expect that any one thing will be the answer.

The good news is, you can have a great life even with a-fib and a-flutter. No, I don’t love my a-flutter episodes; they are annoying and sometimes, even after a decade, still frightening. I don’t run anymore, but a long walk or a moderate—I know, I know, not my favorite word, either—hike turns out to be a lot of fun. No, I can’t put the same hemodynamic load on my heart that I used to, but I can still work up a nice funky sweat underneath the weight machines at the gym.

sob2

Besides, working out is only a part of life. My friendships, relationship with my son, work, and my love life (I’m getting married again, and I’m stoked!) are just as satisfying as ever.

Maybe more so.

Those of us with a-fib or a-flutter aren’t sick, not truly. Nor do we need to afraid.

So—live!

(Thanks to Linda for the inspiration. Thanks to you for reading.)

Emergency Pack for Trail Running or Mountain Biking While on Anticoagulants (Coumadin, Xarelto, Pradaxa, Plavix)

This article is a work in progress and is only a description of my strategy for the time being. I hope to learn from readers of this blog about how to better plan for a trail debacle.

pctrun
Heading out for a trail run on the Pacific Crest Trail

What kinds of things should a person like me, who is dealing with atrial fibrillation and is taking an anticoagulant (I take Pradaxa), carry on a long run in the wilderness? Or during a long mountain bike ride in remote areas?

When the high country in our local wildernesses is not covered with snow, I will generally do runs, nearly every weekend, of anywhere between six to twenty miles. I almost always run alone (except for my trail buddy – Ringo).

Dangerous and a bad idea? Possibly. But this is what I enjoy in life so I don’t plan on stopping any time soon.

The most important piece of equipment is a phone. People complain that everybody is always on their smartphone, and they should NOT be talking on their phones on mountain summits when everybody else is trying to get all Zen-like and self-actualized, and whatever – that’s a different discussion. You certainly don’t even need to have your phone on; but you absolutely should take it with you, and it should be fully charged. The days of getting hopelessly lost and spelling out SOS with rocks hoping a search plane will find you are fading into the past. A smartphone is a GPS and a direct link to help.

I always carry my iPhone in a baggie with my ID and a sheet of paper towel (which I use for unrelated toilet purposes).

iphone
Fully charged and protected from water

Even if there is poor cell phone coverage in your local high mountain or deep canyon wilderness, and a phone call isn’t always possible, I find that a text message can often still be sent. It might take a while but it eventually will be sent, especially if I am moving along a trail.

There is the standard emergency gear that most people take, often called the “ten essentials” which most people carry while in the wilderness. Of course there is truly no such thing as a standard ten essentials and the list of things you carry will vary depending on the season, your skill set, your location, and your past experience.

emergency
My generic survival gear

I got out my little survival kit that I typically carry in the wilderness, and of course not everything is pictured here, and I might not even have all of this stuff with me on any given trip. Naturally I will also have other things like food, gels, electrolytes, a jacket, and plenty of water.

What I found in my default wilderness pack is:

Two knives – a mini-leatherman tool and a standard knife. I will only actually carry one of these.

Two lights – a headlamp and a tiny LED flashlight (one is plenty).

Fire starter – a cigarette lighter, birthday candles, a tampon, and hand sanitizer (which I discovered has completely evaporated).

A space blanket, a compass.

Repair gear (Shoe laces, tenacious tape, dental floss)

Pain pills: Vicoprofen samples – okay they expired in 2000 but I’m guessing they are still good (at least for a placebo effect). Missing: Benadryl for allergies or yellow jacket stings, and I probably should have some of my Pradaxa in case I end up unexpectedly staying out overnight. Also missing: small roll of duct tape, safety pins, and my whistle!

stchristo
Saint Christopher Medal

Oh, and there is a Saint Christopher medal. This one belonged to my grandfather. Well it probably won’t change anything, but it certainly couldn’t hurt. Feel free to substitute your own personal good luck charm.

But what about specific items for the runner on an anticoagulant? Is there anything else beyond the “ten essentials”?

map
Other stuff: Map with reading glasses (if needed) and some rope

Obviously having a major bleed while running alone in the wilderness would be a disaster. Death is certainly a possibility. How can a trail runner prepare to increase the odds of a good outcome?

I always make sure to let somebody know (usually my wife) where I’m going and I also send her a text (I text “OOTW” short for “out of the woods”) when I get back to my vehicle.

I also wear a Road ID. This way if somebody finds me they will know I am on an anticoagulant. Maybe this won’t help, but it certainly is worth wearing. At least they will be able to figure out why I bled out so quickly (I know – not funny).

roadID
My Road ID

Another item I always carry is a bandanna. This can be used for a number of purposes, such as making a field dressing; but I want to have it in case I need a tourniquet. Plus – I have an extra one because my trail dog always has one draped around his neck.

bandanna-2
Bandanna

My bandanna came in handy a week ago when my wife Margo (not on an anticoagulant) crashed her mountain bike and punctured her left thigh with her brake lever. I used it to make a compressive dressing before we road our bikes back to where we could get a ride to the hospital.

One item I do not currently have but definitely need to obtain is a Quickclot field dressing. Evidently these things really work and are routinely used in combat situations. It is a topical coagulant (an anti-anti-coagulant?) which helps clot blood and also serves as a physical barrier to bleeding. I’ve been meaning to obtain one of these for a long time. They are available online via amazon.com, and I just ordered one.

quickclot
Quickclot

Question: Will the Quickclot sponge even work on bleeding in an individual who is on a direct thrombin inhibitor like Pradaxa? Answer: I have no idea. I’ll let you know if I ever get a chance to find out.

In case of bleeding the most important first step is to apply direct pressure. As a surgeon I have a lot of experience with this. Usually sixty seconds of direct thumb pressure will stop or slow most bleeding, but of course if you take an anticoagulant it will take longer. Apply direct pressure as long as necessary. Elevate the wound if possible. Don’t try to clean out major wounds as this will restart bleeding – that can be done later at the hospital.

A tourniquet is a last resort, but the bandanna can be used as a compressive dressing if needed.

Please understand that an anticoagulant doesn’t completely stop clotting of blood, it just makes it take longer. Eventually bleeding will stop. Hopefully before all the blood leaves your body!

OLYMPUS DIGITAL CAMERA
Ringo always has a spare bandanna for me

Bonus – How to stop a nosebleed:

I have been plagued by frequent nosebleeds since I was a child but, oddly enough, I haven’t had a single nosebleed since I started Pradaxa a couple of years ago. The best method I have found is to pinch the nose, fairly tightly, just above the nostrils, and lean forward. Don’t lie with your head back – that doesn’t work. Hold for a full sixty seconds. Repeat as necessary.

If you are, like me, a trail runner or mountain biker on an anticoagulant, I would love to hear from you. Please leave comments and suggestions in the comments area below.

Thanks.

Atrial Fibrillation News Update

Here are a few internet news stories related to atrial fibrillation. In the future I’ll try to update more frequently so I don’t end up with four topics in one blog entry.

OLYMPUS DIGITAL CAMERA

Overall, the increase in risk of heart attack was about 70% in AF patients, even after accounting for other cardiovascular disease risk factors, such as hypertension, high cholesterol, body mass index, and history of stroke and vascular disease. However, when the researchers looked at subgroups, they found that increased risk of heart attack was more than doubled in women and African Americans with AF—but less than 50% for men and whites with AF.

I’m not sure what to say about this – hopefully runners with atrial fibrillation (who hopefully also have other heart healthy lifestyle choices – like a healthy diet, not smoking, reasonable body weight) will do better than the general population. One bit of good news – the blood thinners a fib patients take to prevent stroke also seem to help prevent heart attacks.

pradaxasmall

“Novel” anticoagulants refers to the newer prescription anticoagulants that are used as an alternative to Coumadin (warfarin). Specifically: Pradaxa (which is the one I currently take), Xarelto, and Eliquis.

I can tell you that as a clinician there are not many things more frustrating than prescribing medications for people who are on Coumadin – it seems like it interacts with everything! One of the great things about the newer anticoagulants is that they have less drug interactions – but they still do have potential drug interactions.

Please click on the link to see tables for drug interactions involving Pradaxa (Dabigatran), Xarelto (Rivaroxaban), and Eliquis (Apixaban).

Obviously all of the novel anticoagulants can interact with any other drug that is *ALSO* an anticoagulant – like Plavix or aspirin. Keep in mind that this includes NSAIDs like Alleve (naproxen), Motrin (ibuprofen), etc.

Personally, I completely avoid taking ibuprofen and naproxen – but every once in a while (like after a brutal long run) I will take a Celebrex. Tylenol (Acetaminophen) is fine – no interactions with the anticoagulants (although it has its own issues).

By the way – if you read the article and see a possible drug interaction please don’t stop taking any of your meds – but contact your own doctor immediately for advice.

neautral milk

A recent study has shown that Coumadin (warfarin) actually increases the risk of stroke for people in atrial fibrillation during the FIRST THIRTY DAYS of warfarin therapy. That’s just the first thirty days – the idea is to prevent having a stroke, and that’s what taking Coumadin does.

This finding does not suggest that anything will change – doctors are still going to put people on warfarin to prevent stroke. They just have to get through the first thirty days!

If you are on warfarin and you read this article – please do not stop taking your medication.

Watchman_2

Finally – the FDA has not yet approved the Watchman left atrial appendage closure device by Boston Scientific – but it has given a “vote of confidence.” It appears that this gadget, which is implanted in the left atrium to prevent the formation of the clots that cause strokes, may be approved by the FDA for the US market late this year. The majority of the panel agreed that the Watchman was equivalent to standard treatment with warfarin, but it hasn’t been compared to the new novel anticoagulants (see above).

ryespur

Atrial Fibrillation Stroke Calculator

OLYMPUS DIGITAL CAMERA

Atrial Fibrillation Stroke Calculator

I saw this link today on Facebook and thought I would share it – it is an AF Stroke Risk Calculator, and was posted by the Atrial Fibrillation Association – a great resource for people with atrial fibrillation. As you probably know one of the greatest risks of being afflicted with atrial fibrillation is that it can lead to you having a stroke. Blood clots can form in the malfunctioning atrium, break loose, travel to the brain and – BOOM!!!! – you’ve had a stroke. Prevention is the best approach.

This calculator is basically a clever automated version of the CHADS2 score. I was delighted to find my risk is 0%.

But if course my risk is definitely higher than zero percent – even if my CHADS2 score is zero.

My heart is abnormal in more ways than the atrial fibrillation. I have hypertrophy of my left ventricle (from running – not a risk factor) but I also have “severe hypertrophy” of my left atrium (the top chamber of the heart) which my cardiologist assures me is a risk factor for stroke and although my CHADS2 remains zero I am on an anticoagulant (Pradaxa).

My question has been: Why not include left atrial hypertrophy in the CHADS2 calculation?

Answer: I dunno.

lillianandmargo
Lillian and Lolawanda ready for another trail run

My other question has been: What else can I do to reduce my risk of a stroke?

I understand my risk is NOT zero, regardless of what this calculator says.

Obviously one thing I know I can do is to remember to take my Pradaxa twice daily. Believe me, for somebody who is only taking one medication it isn’t as easy to remember as you might think. I have considered switching to Xarelto simply because of the once a day dosing.

pradaxasmall
My Pradaxa

But other than that what else can I do? One more thing (I think) – stay well hydrated.

As a large, slow, long distance runner (who is often on the trail for several hours at a time) I sweat more than smaller runners, and I have to be very careful not to become dehydrated. I spoke with a friend of mine who is an Internists/hospitalist and he agreed – don’t become dehydrated. Being dehydrated can literally thicken the blood and increase the chance on a clot, and therefore increase the chance of a stroke.

becareful
Be Careful Out There!

How much water should a person drink? I have no specific prescription but what I do is try to drink enough so that my urine is relatively clear once per day. Also there is such a thing as too much water and big, middle-aged distance runners are at relatively high risk of hyponatremia (too much water – not enough sodium) so be careful out there!

We talked about other risk factors are there? Risk factors for blood clots in the legs include being inactive, obesity, and smoking – probably less likely for the readers of this blog.

OLYMPUS DIGITAL CAMERA
Sedentary after a LONG RUN

What about alcohol? Does that increase the risk? He said probably not and in moderation might even decrease the risk – but remember – alcohol clearly increases your risk of atrial fibrillation – and if you drink enough alcohol you will become dehydrated – so there you go!

By the way – don’t expect this this risk calculator or this blog to advise you as to whether or not you should take your aspirin, your warfarin (Coumadin), your Xarelto, or your Pradaxa. It is important that you make this decision with your doctor.

Rejoice – Not All Runners in Atrial Fibrillation Are Slow

mooremtnhalfmarathon
Moore Mountain 1/2 Marathon

The thing I enjoy most about the afibrunner blog is comments from other athletes who are dealing with atrial fibrillation. A recent comment from a runner (we’ll call him “Lon”) really caught my attention – here is a runner who, while in atrial fibrillation, was able to race at six minute mile pace (or better).

Here are some excerpts from his comments:


Way to Go!!!
Since 1983 I’ve run/jogged 59 full marathons and have suffered with A-fib on and off for the last 12 years. I’ve finished the Boston (2001 in 3:23) and NY City (2005 in 4:15) marathons while in constant A-fib while carefully monitoring my heart rate. My cardiologists encouraged me to run marathons and also triathlons. One cardiologist told me that my heart is so strong that it laughs at A-fib and that I have the heart of an olympic cyclist. For the first 6 months of this year my heart was in constant A-fib that no drugs or multiple cardioversions could put it back into normal sinus rhythm. On July 9, 2013 I had the “Wolf Mini-Maze” (at the International A-fib Center of Excellence in Indianapolis) operation done on my heart. It was a great success and my heart has been in constant normal rhythm ever since (nearly 6 months now and I’m not taking any medications). In the Mini-Maze they removed my Left Atrial Appendage (LAA) so that if my heart ever goes back into constant A-fib I will NOT meed anticoagulant therapy. As you likely know life threatening blood clots tend to form in the LAA when your heart is in constant A-fib. The risk of stroke over the life time of an A-fib patient is huge. 3 out of 5 A-fib patients will suffer a stroke in their life even while taking anticoagulation meds like coumadin. That is a statistic that your doctor will not likely tell you about. Coumadin is over rated and is simply not very effective for some people which should be a terrifying realization to anyone dealing with A-fib. Anyway, as much as I love marathons, I’m laying off the long distance jogging for a while and am just jogging 10K’s (one per moth and 3 sprint triathlons this Summer) as well as several other physical activities.
Good health to you!
Lon

I have lamented that atrial fibrillation has made me slow, while openly admitting that I started out slow – I’ve only ran, as far as I know, one six minute mile in my entire life – and that was thirty years ago.

OLYMPUS DIGITAL CAMERA
Finish Line – Eugene Marathon

My understanding about atrial fibrillation is that the atria no longer preload the ventricles, and most people have a decrease of about 20% of their cardiac output. While sedentary people might not even notice this athletes certainly would. I do!

But I have heard that in some patients, certain athletes, there is little change in cardiac output and atrial fibrillation will not affect performance much. Lon seems like one of these fortunate people. Lon’s point about the increased risk of stroke (even if you take your Coumadin, Pradaxa, or Xarelto) is well taken – and I’m guessing that that is why he continued to pursue an effective treatment for his atrial fibrillation.

OLYMPUS DIGITAL CAMERA
Finish Line – Haulin’ Aspen Marathon

But after all those marathons Lon states he is no longer running endurance events – he goes on to elaborate:

Here’s a little more. I tried not to make a long story short above. I left out mentioning that I had a radio-frequency catheter ablation in June 2010 in Seattle that worked great in keeping my heart in normal rhythm until December 2012 when suddenly for no apparent reason went into persistent A-fib. (During that 2 1/2 year period I finished 9 full marathons and 8 sprint triathlons) My heart stayed in persistent A-fib even after 4 cardioversions and large doses of amiodarone. My cardiologists in Seattle told me that I should accept my persistent A-fib and they offered to ablate my hearts pace makers (AV and SA nodes) and give me an electronic pacemaker so that my heart rate can be controlled. That told me that I needed a second opinion so I started communications with Dr. Randall Wolf in Indianapolis about his Mini-Maze procedure. After consultations with an E.D. doctor (and a championship Iron Man triathlete) who had the Mini-maze operation and was very happy with the results, I decided to get the Wolf Mini-Maze and of course I informed my Seattle cardiologists of my intentions and they said to go for it. Absolutely the main reason that I went for the Wolf Mini-Maze is that it removes the left atrial appendage which brings my risk of stroke down to that of a healthy person with a normal healthy heart while not taking any anticoagulation drugs. The fact that I now enjoy a normal heart beat is just a huge plus factor.

From 1983 until December 2012 I completed 61 full marathons a most of which ran with all out efforts (I’ve averaged sub-6 minute pace all the way). I’m now finding out that long distance running is simply not good for the heart and most likely caused my A-fib problem.

Google Dr. John Mandrola’s 18 minute video called “Cycling Wed: I told you so…”. It is very illuminating and a must see for all endurance athletes. Please check that out.
Cordially,
Lon

I don’t know much about the Wolf Mini-Maze procedure and don’t necessarily advocate it for everybody, but clearly it worked in Lon’s specific situation. Here is some information regarding the Wolf Mini-Maze.

lakeofinish
Finish Line – Lake of the Woods 15K

No need to Google the video by Dr O’Keefe (posted on Dr Mandrola’s blog) I have the link right HERE.

Here’s the video:

If you don’t feel like watching the eighteen minute video I will summarize it for you – Exercise is good for you but in moderation. Too much or too intense exercise causes chronic inflammation of the heart and can ultimately harm the heart (atrial fibrillation, among other risks).

But if you are an endurance athlete dealing with atrial fibrillation you already know this – surely you have had a dozen or so friends and relatives, possibly sedentary and/or obese, kindly forward you information about the study he refers to – as if to justify their seemingly wise choice to avoid marathons and triathlons and replace it by watching other people play sports on television. Yes, this study was in all the newspapers and magazines last year.

avegiantsfinish
Finish Line – Avenue of the Giants Marathon

Please understand, and I paraphrase here, that Dr O’Keefe states that exercise is good for your heart, and being obese and sedentary is bad for your heart – but that overdoing it is a problem. He didn’t say people should avoid exercising.

My choice – I understand the concept of the “law of diminishing returns” as well as the next guy; but for me, well, I enjoy long, slow trail runs and mountain bike rides more than just about anything else I can think of – so I chose to continue.

8088969997_a13aa36c8c_z
Finish Line – Bizz Johnson 50K (I completed the 50K in atrial fibrillation)

Running My First Marathon While In Persistent Atrial Fibrillation

Not my first marathon, of course, I think it was my fourteenth marathon, and maybe not even my first marathon in a fib.

vancusabefore
Pre-Race

I should really re-title this as something about running my first marathon when I KNEW I was in atrial fibrillation. I recall one particular marathon, a couple of years ago, where I started out great and after twenty miles I totally fell to pieces. I would have quit if it hadn’t been a trail marathon with no easy way to DNF – I still had to get to the finish line. In retrospect I realize this was not “hitting the wall,” which I don’t generally tend to do, but I’m pretty sure I went into atrial fibrillation at that point. I don’t mind suffering but that was absurd. It was like eating your favorite food and inexplicably finding it tastes like $&!T.

That was before I even knew I was going into a fib, and I was probably still going in and out of a fib – but ever since May 12, 2012 I have been in persistent atrial fibrillation (meaning that I am always in a fib and have no expectation of NOT being in a fib).

vancusastart
Lining Up At The Back For This One

In May of 2012 I was actually training for my first 50K (31 mile) race (Bighorn Mountain Wild and Scenic Trail Run, Buffalo, Wyoming) and I had been doing a lot of long runs – looking at my training log I see that I had already done six twenty-milers during my training for that race.

I asked my electrophysiologist, who I hadn’t yet seen for my appointment, if I could run the 50K and he said I shouldn’t; so I was effectively grounded as far as the 50K was concerned.

But being the incorrigible distance runner that I am I rationalized, “Well I didn’t specifically ask about running a regular marathon. I‘ve been running 50-60 miles per week for a couple of months – I sure wouldn’t want to waste all that training, would I?”

I looked at the online marathon calendars and discovered that there was a regular marathon (26.2 miles) that same weekend, and only a five hour drive – the Vancouver USA Marathon in Vancouver, Washington – just across the river from Portland, Oregon.

I admit that I was scared – this was unknown territory – running a marathon while in atrial fibrillation. Would I be able to complete it? Would I drop dead? Would I suffer like an animal, I mean, would I suffer even more than running a regular marathon?

vancusacourse
Along The Course

In a lot of ways the course for the Vancouver event was a lot safer than the Wyoming event. The Bighorn was up and down remote canyons in the Rocky Mountains whereas the Vancouver USA was a flat course through the suburbs of Portland. If I needed to drop out of the race, or if I needed medical assistance, that would be simple – go ring a doorbell.

But naturally I was still nervous when I started out. My plan was just to get through it. I decided not to try to beat anybody, to keep it slow and steady, and to walk up the few little hills that were part of the course.

vancusa50states8
Marathons In All 50 States – EIGHT TIMES!!!!!

As stated previously the experience of being in persistent atrial fibrillation is different than that of going in and out of a fib. Persistent a fib isn’t as bad. I’m slower but stable. People who suddenly go into a fib in the middle of a race often find themselves unable to continue – it can be devastating. I know – I think it has happened to me (see above).

At any rate – I started running with the eleven minute mile pace group and hung out with them for most of the race. Eventually I realized that running this race in atrial fibrillation wasn’t that much different than any other marathon that I have done – except for being a bit slower. When I was into the final miles I was surprised that I felt fine – clearly much better than the race described above. I think my plan of keeping it slow and walking the one or two hills worked out – I had very little suffering.

Crossing the finish line was an emotional experience and even though I was there all alone I broke out in sobbing tears. Tears of joy, I guess, because I had finished the marathon and I hadn’t died! It really was just about like normal and I started wondering – just how many of these things had I done in fib?

vancusamedal
Large Man Crying At Finish Line

If you’re a runner in atrial fibrillation and you are reading this I want to make sure that you realize that I am NOT saying, “Go run a marathon in atrial fibrillation.” I am simply relating my personal experience. I am just one individual and, naturally, your experience is different. I stress that it is important that you agree with your cardiologist regarding running and atrial fibrillation. This blog is just my personal story – it isn’t peer reviewed and I am not a cardiologist.

By the way when I finally saw my electrophysiologist he cleared me to continue running and did go on to complete my first 50K four months after the Vancouver USA Marathon. At this point I am comfortable with distance running in atrial fibrillation and am not (too) afraid of dying out there – but that first marathon in (known) atrial fibrillation – well – that was huge.

My next event, incidentally, is the Bizz Johnson 50K in October.

Mountain Biking and Atrial Fibrillation

waldoburn

Mountain Biking in Oregon – Waldo Lake Trail

I’ve just returned from a nearly three-hour long mountain bike ride, so I thought it would be a good time to write about mountain biking while in persistent atrial fibrillation (this discussion is pertaining specifically to persistent A fib meaning I am always in atrial fibrillation and don’t ever expect to NOT be in a fib; I think people who have episodes of paroxysmal atrial fibrillation are going to have a different result).

One of my main concerns when I was first verified to have persistent atrial fibrillation was whether or not would be able to continue mountain biking. I started road riding in the early 80s, back when I still lived in the Midwest. When I moved to Klamath Falls, Oregon in 1987 I began mountain biking. This is a great place to ride, and we have a terrific trail system at Moore Park, as well as a couple of local high mountain singletrack trails that are legal for mountain biking (Brown Mountain Trail, Rye Spur Trail). I feel real connection to these trails and have been riding some of them for over twenty-five years.

ryespur

Rye Spur Trail, Klamath County, Oregon

I didn’t use to run is much as I do now, and back in the late 80s and early 90s I would pretty much mountain bike five or six days per week. I have developed some good bike handling skills, especially since in the early days there was no front or rear suspension, and nobody really knew what they were doing anyway. We pretty much plunged our quick release seat posts down into the frame, switched to granny gear as soon as we hit dirt, and would (inappropriately) lock up our back wheels and skid down steep hills – very much discouraged in this modern era. But that’s the way it was – skills develop over time.

yeti

One of my old mountain bikes

At any rate I have developed good skills – skills specific to these particular trails, seeing that I generally know every rock and anticipate every little drop off.

There are two issues with mountain biking and atrial fibrillation. The first, obviously, is that my cardiac output is reduced by about 15 or 20%, so naturally I am a little bit slower. People get slower when they get older, too, so there’s that to deal with as well. But the real issue, I think, is the fact that I am on a potent anticoagulant – Pradaxa. One of the disadvantages of Pradaxa is that it works really well (but the real disadvantages that it does not have a reversal agent). Clearly – there is a risk of bleeding associated with crashing your mountain bike on the trail.

I sort of doubt whether Coumadin is that much safer than Pradaxa as far as this is concerned – while it is true that there is a reversal agent for Coumadin, what is the likelihood that, if I had a major crash, I would be able to get to the emergency department in time for them to give me the reversal agent? I generally ride alone, and our trails are pretty remote. It would take a while for me to get out of there, especially if I was bleeding all over the place, or even worse, if I were bleeding into the space previously occupied by important parts of my brain.

Over the years my skills have improved and my style has changed quite a bit. At age 53 I’m no longer much of a daredevil (I never really was). Back when I was thirty and was riding about five days per week, I estimated that I had one minor crash per week, and usually one major crash per season. In all that time I think I’ve only actually hit my head once (I definitely recall a bleeding ear after crashing on a technical descent on a trail called Garbage – never liked that trail).

I have always felt that all of your instincts and reflexes are directed toward protecting the head. It’s automatic.

Of course I have worn a helmet when bicycling since 1983. I even bought a new helmet when I went into atrial fibrillation and started anticoagulation. It fits better than my old one and it’s florescent green, so hopefully I have less chance of being run over by a pickup truck.

The only time I have ever had a significant bleeding problem while mountain biking was back in 1990. I came off the trail ride and was heading around the paved road at Moore Park to the picnic area to get some water when some young guys in a pickup shouted at me, “Wrong way, dude!” I didn’t yell back at them, but I turned around and glared at them as I zipped down a little hill to the picnic area, giving them a look that said, “You talkin’ to me?” I was going pretty fast at that point and hit a speed bump that sent me skidding across the pavement for a while.

I bet those guys were impressed.

Anyway, I had a lot of road rash, was just goes with bicycling to a certain extent, but the worst thing was I had a “degloving injury” on the side of my abdomen. What that means is that part of my skin more or less stuck to the pavement while the rest of me kept moving and the skin was pulled away from the underlying tissue. It didn’t break all the way through the skin, but I developed a hematoma the size of a baseball right where the “love handle” would normally be. Twenty-three years later it’s actually still there to a certain extent, not the blood, but a big lump of scar tissue beneath the skin, and the skin over that area is still kind of numb.

OLYMPUS DIGITAL CAMERA

Klamath Ridgeview Trail – Moore Park

That happened with no anticoagulation – I never even took an aspirin back then. If I had a similar injury now that would’ve been a major hematoma – I might even need a transfusion.

That’s the risk. Falls are part of riding a mountain bike. I’ve been on Pradaxa for a year now and I think I’ve only had two crashes. I am so much more cautious than I used to be that I rarely ever crash, and when I do crash it usually something stupid like having mud or ice in my pedals and not been able to click out when stopping, falling over like Artie Johnson used to do on that tricycle on Rowan and Martin’s Laugh In. I honestly can’t say that I’ve noticed more bruising or bleeding than I would expect prior to Pradaxa. So far, so good.

I feel it is important, however, that when you’re cardiologist tells you that you probably shouldn’t be mountain biking that you do what he says. Don’t be like me. Don’t disregard your cardiologist advice. Do as I say, not as I do.

All joking aside – there is a certain risk and if you can accept that level of risk, then continue mountain biking. If not, stay off the trails.

As far as how much persistent atrial fibrillation affects my climbing, well, when I first get started it is quite difficult. After I warm up it really doesn’t seem like it’s any different than not be in atrial fibrillation. Recall that I do not take anything like a beta blocker or an antiarrhythmic – if you take medications like that your experience may definitely be different. All I take is the anticoagulant.

I’m slow, definitely slower than I was twenty-five years ago, but it almost seems like it’s within the realm of what you’d expect from being that much older. Like I said in the article about running in atrial fibrillation, it’s almost like you’re a pickup truck with a four speed manual transmission, but you can only use second and third gear. But you can still have a lot of fun in those two gears! It just takes a while to warm up.

Personally I think road biking is more dangerous than mountain biking, as far as bleeding risks are concerned. All my best crashes have been on pavement, including my best mountain bike crashes (see above). And pavement is usually where cars, driven by people who are talking or texting on smart-phones, hit you.

As far as endurance and energy output are concerned road biking, by its very nature, is easier to do in persistent atrial fibrillation that mountain biking. On a road bike you get into a groove, and have a certain steady energy output. That’s perfect for atrial fibrillation. Anybody who trail rides, especially on technical, steep trails, can tell you that mountain biking consists of a little burst of energy here, then a little short, brief period of rest and recovery here (by slow pedaling for a couple of seconds), and then hammering the pedals again to get over the next little obstacle, or whatever. That’s what’s fun about it – it’s almost like doing a puzzle. Trail riding involves a lot of little, short, anaerobic bursts of energy – and of course atrial fibrillation has diminished this ability, as far as I’m concerned.

Although, speaking strictly of endurance, I don’t think that is changed too much since I went into persistent atrial fibrillation. I can still ride for just as long as I used to be able to ride. I have found that while I have lost speed with age I have gained endurance in spite of atrial fibrillation.

ridgeviewtrail

Moore Park Mountain Bike Trails

I am very interested in other mountain bikers’ experiences with atrial fibrillation, especially athletes who take rate control or anti-arrhythmic medications. Please feel free to leave comments – Thanks!

Heat and Salt and A Fib

As stated previously I get pretty lightheaded when I get up from a sitting position after a hard workout, particularly in hot weather. Orthostatic hypotension. I don’t know why I get dehydrated so easily now, but I have learned that I need to eat something salty and drink a lot of water  after a workout, particularly a run or a bike ride which is longer than an hour or two, otherwise I get pretty dizzy when I first standup, and I’ve had a friend who is an nephrologist and another friend who is an internist both tell me to make sure I drink plenty of water after a workout and get some salt. Just one more fun aspect of being in persistent atrial fibrillation.

OLYMPUS DIGITAL CAMERA

Pre-Race Motel

This is the first time in my life I’ve ever actually been trying to get more salt. Most people spend their lives trying to avoid salt. I have started bringing potato chips for a post run snack to the trailhead for my long runs. Another great post run snack is some blue corn chips with some hummus with some Hoisin sauce.

OLYMPUS DIGITAL CAMERA

Pre-Race

Although it is neither here nor there, I’d like to state that I am a vegetarian (nearly vegan – if not for the occasional veggie pizza) as far as diet is concerned.

I also find that I am more sensitive to heat, which is obviously related. Last summer I would often start to feel pretty tired 17 miles into a 20 mile training run. In cool weather a 20 mile trail run is no problem. When I’m training for a 50K I basically try to do a 20 mile run every weekend.

Fortunately I live in Klamath Falls, on the East side of the Cascades of Oregon, where we have relatively cold Winters and generally cool Spring and Autumn. Summer, obviously, can be pretty hot – but nothing like Southern California, Arizona, Mexico, the South, etc.

OLYMPUS DIGITAL CAMERA

Resting During a Trail Run

I have also noticed over the past several years that I did quite poorly during marathons if the weather got hot. The concept of hot weather is a relative term – for me anything over 70°F (21°C) would be considered hot. My ideal running weather would be 35 to 55°F. Ten years ago I could do a 20 mile run when it was 90°F (32°C) without much problem. Those days are over.

I’d be interested in hearing from other people with atrial fibrillation with respect to this. Please comment.

ringotired

Ringo – Pooped Out After a Long Trail Run

Persistent and Intermittent Atrial Fibrillation

There are different types of atrial fibrillation. They’re all the same arrhythmia, the main difference is duration. Some people have intermittent (or paroxysmal) atrial fibrillation. This means that the individual goes into atrial fibrillation for a short period of time – maybe a couple minutes, maybe twenty-four hours, but less than one week. Most of the descriptions of atrial fibrillation I have found on the web describe paroxysmal atrial fibrillation.

Atrial fibrillation that lasts for longer than seven days is called persistent atrial fibrillation, and atrial fibrillation that lasts for over one year is referred to as long-standing persistent atrial fibrillation or permanent atrial fibrillation.

Regrettably that is the type of atrial fibrillation that I have. I have just “celebrated” my one year anniversary of persistent atrial fibrillation. I miss sinus rhythm.

twentysix

The Best Mile Marker

People who are in sinus rhythm most of the time and go into atrial fibrillation only occasionally are fortunate because they get to be in sinus rhythm most of the time, which is basically the hot set up for any type of endurance sports. The disadvantage is that when these individuals to go into atrial fibrillation the effects are pretty devastating, and more often than not they find themselves on their hands and knees wondering what happened. The other bad news for people with intermittent atrial fibrillation is that it may very well progress into a persistent type atrial fibrillation, and of course there is a risk of having a stroke. So it is important to discuss this and formulate an appropriate treatment plan with your healthcare provider.

The disadvantage of being in persistent, but relatively asymptomatic, atrial fibrillation is that you have a performance penalty all the time; but the advantage is that you stabilize, at least I have, and are able to participate in your sport, albeit at a slower pace. It never gets much worse or much better.

Maybe there are some athletes out there who are in persistent atrial fibrillation who are unable to continue to participate in running, mountain biking, etc. if so I would encourage you to share your stories in the comments section.

All unable to discuss at this point in time is my own personal experience.

finish line

Bizz Johnson Marathon – I think I’ve done this one five times