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.

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.