afibrunner.com – Healthline’s The Best Atrial Fibrillation Blogs of the Year

afib-best

I’m going to “ring my own bell” here and post that afibrunner.com has been chosen, once again, as one of Healthline’s The Best Atrial Fibrillation Blogs of the Year. Thanks so much, Healthline!

According to my WordPress dashboard I have a lot of views of my blog directed from healthline.com – I truly appreciate it.

Please feel free to leave comments on this blog.

Update Part 2 – Atrial Fibrillation, Pradaxa Fail, Transient Ischemic Episode, Blood Clot in Left Atrial Appendage

Jimi Hendrix sang, “manic depression’s a frustrating mess.” Well, I think the same can be said of atrial fibrillation!

mountainbikingwringoRingo and Me – Photo by Ben Vallejos

It’s been a while since I have written and I have to say the last couple of months have been nerve-wracking. As I posted in a previous entry I had a TIA (transient ischemic attack) while running a couple of months ago, had a normal carotid scan, but a TEE (trans-esophageal echocardiogram) showed that I had a small blood clot in my left atrial appendage.

In other words I had a “mini-stroke” and was at risk of having a full on stroke.

pradaxa

This TIA occurred while I was on Pradaxa, a newer, novel anticoagulant. At that point I was taken off Pradaxa, started on Lovenox (low molecular weight heparin) injections, and warfarin (Coumadin), and also aspirin. I was instructed to discontinue running, and bicycling, and limit my activity to easy walks, and a repeat TEE was scheduled two months after the initial one.

I won’t hold back any longer regarding the surprise ending – I never had a second TIA “mini-stroke” (that I know of) or stroke and the follow-up TEE (trans-esophageal echocardiogram) showed that the blood clot inside my heart is now gone. Hooray!

appendagePhoto – The little cul-de-sac is the LA appendage

Just to review how this happens: when you are in atrial fibrillation your atria is beating so fast it’s like it isn’t beating at all, just sort of vibrating. There is a part of the left atrium (the “appendage”) where the blow flow is extra sluggish, and this is where clots can form. When a tiny piece of clot breaks of and goes into the brain that’s a TIA. If a big clot is present and breaks of into the brain that’s a stroke, which of course can be disabling and even fatal.

It goes without saying that I am disappointed that this occurred while I was on Pradaxa. I figured that as long as I was taking it I was safe, and I liked not having to watch my diet or have blood tests constantly. Taking Pradaxa is easy – “set it and forget it.” Now I’m on warfarin (Coumadin), a royal pain in the butt, and have to micromanage my diet constantly – this drug is not an easy choice for a vegetarian! Eating too many greens (think kale) is dangerous as is not eating enough greens. Imagine trying to eat about the same amount of kale or broccoli or spinach each day.

zaPhoto – vegan pizza

My target INR is between 2.0 and 3.0, but seeing as I have had a TIA while on an anticoagulant I am trying to keep it nearer to 3.0 or even higher (3.0 – 3.5).

The two months between echocardiograms was an era of angst – anxiety and fear – for me, especially the first several weeks. Every symptom, no matter how minor, seemed like stroke. For example – lie in bed trying to get to sleep and your hand becomes numb – normal, right? Not when you know you have a blood clot in your heart – that seems like a stroke! Jump up from bed, start testing the muscle strength in each arm and leg, recite the alphabet, smile, frown, move eyebrows up and down checking for asymmetry. Do you think I’m exaggerating?

Every once in a while a person stammers or mispronounces a word. Normal? Maybe, but not when you are obsessed with a gigantic blood clot lodging in your brain.

As far as exercise was concerned at first I was limiting myself to short, easy walks more appropriate for a non-athlete. Eventually I became a bit bolder and started doing longer (but slow, especially up hills) hikes of an hour or two. It took me three weeks (!) to bridge to a therapeutic INR, so I was on warfarin and Lovenox for all that time. Once I was off the injections I started doing bike rides – but they were on non-technical trails and were slow, especially while going uphill.

My brain never got the memo that I was no longer a long distance runner/cyclist so I still ate like I was, and consequently I’ve gained some weight.

At this point, after finding out the clot is no longer present, I have started increasing the intensity of my bike rides, but mostly I’m still doing bike rides. I haven’t yet started running again – but I will.

I am mountain biking again, but not on any trails that would be considered challenging. Well, that’s not 100% true, I guess.

awol-1-2Photo – “Adventure Without Limits?”

As far as mountain biking is concerned I am phasing out technical trails (gradually). I made a deal with my self that if I didn’t have the blood clot on the second TEE I would get a new bike – and I did. I got a Specialized AWOL, which is a “gravel grinder.” That’s sort of a cross between cyclocross bike and a loaded touring road bike – basically a bike designed for gravel or dirt roads – we have an infinite supply of these around here so I have a lot of exploring ahead of me.

As far as that blood clot is concerned I’m very pleased it has gone away – but I am not fooling myself that it is gone forever. It could return at any time. It wasn’t there when I had my second TEE, but it could actually be there right now – how would I know? How long had it been there and how many times have I had a clot in that area? There’s no telling without doing a ridiculously expensive, somewhat invasive test over and over. I guess all I can do is stay vigilant, take my meds, watch the diet, and keep on trying to run, hike, and ride, even if it is at a reduced level.

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

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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.

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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.)

Update: Atrial Fibrillation, Pradaxa Fail, Transient Ischemic Episode, Blood Clot in Left Atrial Appendage

Ridgeview Trail - Moore Park

Ridgeview Trail – Moore Park

About two weeks ago I was out for my typical Saturday two hour trail run on Moore Mountain with my dogs. It was a fine day and I felt great, and with about ten minutes left in the run I ran into three of my friends who were out mountain biking. My friend Linda, a Physician Assistant, was trying out her fancy new mountain bike and we stopped to talk for a while. She showed me her new bike and I introduced her to my new dog. I noticed, and commented, that I was having a little trouble getting my mouth working properly. I didn’t have any trouble finding words, or even saying the words, but my tongue just felt sort of thick – especially with consonants like “R” that seem to be made in the back of the mouth. I immediately did my self inventory for asymmetry and muscle weakness and found none. I attributed it to having had one of those little, annoying white sores in my mouth, accompanied by some swollen glands and thought nothing of it.

Linda Cyclecross racing

Linda Cyclecross racing

I finished my run, which involved a fairly technical descent, ate my post-run Clif Bar, and went home where I noticed nothing amiss. I forgot about it until Linda texted me the following day asking how I was doing and saying she was worried about me. I assured her – I was fine!

The next Monday, at work, I thought I’d ask my friend and co-worker, Dr Zakir Ali, if he thought the incident was any reason for concern. Dr Ali is a neurologist who works a couple of days a week at the orthopedic clinic, where I work as a podiatrist.

He wasn’t as dismissive as I was about the incident and said that that was very suspicious for a TIE (transient ischemic episode). A TIE is basically a small, brief stroke, in this case likely caused by a small blood clot that resolves fairly quickly. Dr Ali said I should, at the very least, get an echocardiogram to see if there is a clot in my left atrium, and possibly a carotid artery scan as well.

I have been in permanent atrial fibrillation and on Pradaxa, a potent anticoagulant (blood thinner) for two years and had never missed a dose. I thought he may have been over reacting – and I had had an echocardiogram just two months ago.

But Dr Ali had told me, “You will never regret checking.”

And I agreed.

Okay.

mooremtnnaturscape

So I called the on call cardiologist, explained what had happened, and he told me a standard echocardiogram would be useless as it won’t show a clot, and recommended a trans-esophageal echocardiogram, and also a carotid scan (ultrasound).

I mentioned that I had had a trans-esophageal echocardiogram before (in 1994!) and it was like swallowing a telephone. He said he’d get anesthesia involved and we set up both procedures not expecting to find anything.

So the carotid scan came first and was normal, as expected.

Last Wednesday I went to the hospital and checked in to Day Surgery – which was a peculiar and strange experience for me. I’ve been working there, as a surgeon, for the past twenty-five years, but this was my first time being there as a patient. It’s a little disorienting, and oddly embarrassing, to be on “the other side of the door.”

Anyway – Dr Vince Herr, the anesthesiologist, gave me some propofol so I don’t remember a thing; but when I woke up I was told that I had a small clot in my left atrial appendage, and turbulence in my left atrium as well. This was a surprise for everybody involved. Judging from my lab work and the bruises on my arms the Pradaxa seemed to be working – but evidently not well enough! And that “small clot” looked pretty big to me – downright dangerous.

Trail Running on the PCT

Trail Running on the PCT

At that point I was immediately started on Lovenox injections twice daily (for six weeks!), the Pradaxa was discontinued, and I am beginning to take warfarin (Coumadin); and of course I stay on the beta blocker (carvedilol). My cardiologist gave me the first Lovenox injection right in the post-op area.

Also it looks like no running or bicycling for six weeks – which of course is devastating to me, emotionally, but – shit! – blood clot / stroke / potential death – yes, I am definitely sticking with the program!

The injections are easy to do, they burn a bit but don’t really hurt, and every injection leaves a bruise. Believe it or not I enjoy and look forward to each injection because I’m hopeful that they will be helpful.

pradaxasmall

I’m disappointed that the Pradaxa failed – it is much easier to take that warfarin. Remember that I am a vegetarian and one of my passions is eating healthy food, especially kale. Also everyday, up until now, I eat a little square of nori (seaweed – like the wrapper on sushi) thinking that it would be a good source of iodine as I don’t eat any seafood or use table salt. Kale and nori are probably the two worst foods to eat if you’re taking warfarin!

Taking warfarin is going to be a real challenge – changes will be made, changes that actually seem sort of unhealthy. The one advantage is that warfarin is, unlike Pradaxa, reversible, which is a true benefit in the case of a bike or auto crash, a GI bleed, a head injury, and so on.

Moore Park Trails

Moore Park Trails

In six weeks the trans-esophageal echocardiogram will be repeated and hopefully the clot will be gone. If not some sort of procedure (by the electrophysiologist) is in store for me. Hopefully I will 1.) not die and 2.) get back to trail running. Until then my nerves are wracked worrying about having a major stroke!

I need to say that I feel incredibly blessed – if I hadn’t met my friends and stopped to chat I never would have known I was having a TIE. And if Linda hadn’t have texted me the next day I wouldn’t have ever pursued it, because I had, in my mind, completely dismissed it. And also – how many people actually have a neurologist right in their office who is willing to talk at any time?

Clearly I’m not through this yet – but in a way I feel I have already dodged a bullet. Really, if it weren’t for Linda that blood clot would have just kept getting bigger and who knows what would happen next? I might be dead by now. Even as it is now – who knows? But at least now I know I have a problem and the treatment plan has been changed.

So thanks, Linda!

Me and Linda in Costa Rica

Me and Linda in Costa Rica

I would appreciate any comments, especially shared experiences, you might have.

To be continued. Wish me luck.

Atrial Fibrillation, Running, and Beta Blockers Part Two

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The last article I wrote about beta blockers was written last Summer when I was more or less just starting the beta blocker. I had noticed a decrease in performance and exercise tolerance and when I went to the cardiologist and had an echocardiogram it was determined that my rate was going up and my ejection fraction was going down – that means my heart was pumping less efficiently and was pushing out as much blood with each beat. I was put on a low dose of carvedilol (6.25 mg twice daily) and it was thought that this would allow my ejection fraction (EF) to come back up.

When I started my EF was 55%, but when I had the echocardiogram mentioned above it was down to 45%. As noted in my last beta blocker article I suffered on runs and bike rides but felt it was worth it as I anticipated improvement.

When I returned for the follow-up echocardiogram I was extremely disappointed to learn that my EF had actually gone down to 37%. Not good.

At that point I the dosage of my beta blocker (carvedilol) was titrated up from the minimum dosage to the maximum dosage (50mg twice daily).

As you might imagine between the atrial fibrillation, the decrease in EF, and the high dose of beta blocker – running became extremely difficult. All three of these things decrease my cardiac output and, of course, that translates to poor performance. I now found I had slowed to a ludicrous pace, and honestly, running was starting to become a chore.

Running was starting to become unenjoyable; but I continued anyway.

I felt like every run was my first run after not exercising for several years, and I was walking up the most minor hills.

Last week I returned to the Heart Clinic and had yet another echocardiogram. To be honest I haven’t been feeling any better and runs still seem difficult so I decided not to even look at the screen or ask the tech about my EF as I assumed it was still poor. I’d just wait until the follow-up appointment with the cardiologist. But the tech, who knows me by now, just came out and told me – “Well, it looks like your ejection fraction is improving – it’s up to 47%.”

Well, that is good news. At least this suffering through the beta blockers is leading to some benefit.

That was just the preliminary reading, my new cardiologist (my previous cardiologist retired from clinic but still works at our hospital) interpreted the echo and said it was more like 50%!!! That’s nearly back to normal range (52-70%).

One interesting thing the cardiologist told me: she said that one would expect that people who are more athletic would have higher ejection fractions than non-athletes but in reality the opposite is often the case. I told her that my heart is so big that if my ejection fraction was too high there would be too much blood – ha ha.

hot lava

There’s something I don’t understand about echocardiograms and atrial fibrillation – as anybody who is in a fib knows some beats are better than others. It’s easy to feel that – some are short and weak and others are longer and more powerful. How, when looking at the heart with the echo machine, can you tell what kind of beat you are having?

So there is some good news. Runs are still difficult and I don’t see myself ever being completely off of the beta blocker – but hopefully a different dose in the future when my ejection fraction reaches whatever the goal value ends up being.

In my next article on running and beta blockers I will discuss “Beta Blocker Blues” and the way this unpleasant medication makes me feel fatigued and, often, quite depressed. But for now I’ll embrace the joy of knowing my ejection fraction is significantly improving and will likely get even better.

Goodbye Ringo

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Ringo Dingo  Sept 2005 – January 2015 – Rest in Peace

Anybody who has been reading this blog has noticed my little trail dog Ringo in the photos that accompany my articles. He died a couple of weeks ago after he ate a piece of a dog toy, had a bowel obstruction, and developed peritonitis. There was a lot of care, medications, and even a couple of surgeries; but in the end Ringo didn’t make it.

This was surprising because he had always been so tough. He could run twenty miles and still want to play fetch when he got home. This is the guy who pushed through some blinds, pushed open a screen, and leapt out of a second floor window to play fetch with one of his dog friends, and didn’t even so much as limp afterwards.

His last week and a half was his living hell; but the previous eight years were wonderful. When Margo & I rescued him he was a two year old “cowardly cowdog,” fired from three ranches in Lake County, Oregon for being afraid of cows, and being too friendly to be a watchdog – but he found his confidence as my trail buddy. We put in well over a thousand trail miles per year – running, cross country skiing, hiking, and mountain biking; not to mention going everywhere in the truck with me, coming to work with me at KFPC, and even coming with me when I took out the garbage. We are happy for you – your suffering is over – you are fine now. Margo and I will miss you for the rest of our lives. Rest in Peace, Ringo Dingo.

Spraguerun2

We do have a new rescue dog, a kind, affectionate four year old border collie we call Joey, and I think he will make a fine trail buddy.