Heart on the Run

It’s my heart that’s on the run. Unfortunately, my heart is an overachiever when it comes to being fast, and that’s creating a problem.

I don’t know when my trek down tachycardia trail really started, but data-wise the first time I noted a high heart rate in my workout log was February 16, 2013, when I wrote off the much-higher-than-usual high heart rate I experienced in the last mile of the Flash 12K as a fluke.

Cardiac Issues

Though the ensuing episodes of high heart rate, the cardiologist visit (when I was initially cleared), the blog post about the 2014 Turkey Trot (after which Shannon Sullivan, Mary Jean Yon, and David Yon insisted I seek other answers), the electrophysiologist visit, the implantable loop recorder, the electrophysiology study, and the year of attempting to manage my symptoms with a beta blocker (because an ablation was contraindicated), I kept identifying myself as a runner, kept saying, “it’s a pain but as long as it’s confined to my running,” I just need to make adjustments.

It was when I was “just” walking a 5K on October 2 that I hit a physical and emotional wall on this trail, and I haven’t figured out a way around it.

Cardiac Issues

At the Stop the Violence 5K, BEFORE the race. Turns out Harper (the dog) and I each had our own struggles that day.

Besides the actual facts of what occurred over the hour which changed everything for me, my hesitancy to ask for help makes me want to kick myself in my OWN butt. I had not taken a beta blocker before the race because I’ve never needed one in a “walk” situation before. When my HR goes up precipitously, it does so with no warning. When it happened that day, I tried to stay calm, continuing to walk and do vagal maneuvers. I was passed by one couple who said “do you need help? And made some reference to one of them being qualified to help if I was having a problem.” Turned them down. I sat down on the curb (side note: I hate sitting down during races. I especially hate sitting down within sight of the finish line.)

I decided to walk back to the start area instead of trying to finish the 3.1 mile route. I walked past a man washing his car and made light conversation about his dog who was barking from the window rather than explaining I may be having a health issue. I was in a neighborhood where I know several people who probably would have come to help me if I had asked. During the attempt to walk back to the start area, my HR increased to an unhealthy rate again. I sat down on the curb, again. Throughout, I was texting my husband, explaining what was going on. I needed someone to be in the know.

I was participating in the race as part of a team, but I didn’t have anyone’s cell phone numbers I took my smartphone out and sent a message to the team’s event page on Facebook and one to our captain via PM. I explained that they should take their time (again, I might could have mentioned that I was possibly having a health crisis) but that I was going to need someone to pick me up. Eventually the race organizers sent a volunteer in a golf cart to come pick me up. Arriving at the finish line as a passenger in a golf cart rather than crossing it under my own power was so humbling (and, honestly, embarrassing).

Cardiac Issues

I didn’t share this publicly on 10/2, but this is the pic I sent my coach and team as I waited on my golf cart rescue chariot.

Here’s where things stand for me at this point:

This Is Not Just About Running Anymore

It was one thing to change my approach to running as the tachycardia issue got worse. Now that it’s affecting walking, the situation has gotten more serious as it impacts a proportionally larger part of my life. I’ve always had a sort of “I’m not fast but I can hang with pretty much anything endurance-wise” approach but now I find myself evaluating EVERY activity, not just the ones that are labeled as “exercise,” on its likelihood to be affected by my issue. When I was at a conference at Disney recently, my companions and I were running late to get to a dinner reservation in EPCOT because of some transportation changes (the Monorail to EPCOT was not running). We were under the gun to get to the restaurant before our reservation was cancelled and my credit card was charged. It’s a pretty long way from the admission gates of EPCOT to “Japan,” and I was praying I could keep up with their brisk pace, and popping a beta blocker hoping that would help me hang with them (it worked out fine).

I need to be able to walk a mile without stopping, both for exercise and because my life just involves a lot of “going.” 

Being Stubborn About Doing Things on My Own Can Be Dangerous

The double-pronged issue of a) loving doing things solo and b) being hesitant to ask for help is an issue that could just be classified as “that’s how I am” but now it impacts my health and survival. I’m grieving the limitations I feel now — I am not going to go out and spend an hour isolated on the Greenway — who would find me if I passed out? And although I would advise anyone in my circle to ask for help if they need it (and hopefully I would be the first to offer if they asked), I hate imposing. This is not an easy change to get used to.

We need each other. My biggest adversary here is myself, and I need to reach some detente with me.

The Exercise/Fatigue/Caffeine Cycle

Maybe none of this would be an issue if I had followed the cardiologist’s advice more than ten years ago and stopped caffeine altogether. I have tried a few runs without caffeine and still experienced problems, so I can’t say it’s the caffeine. But I am in a cycle (that I’ve almost always been in) of dealing with fatigue. I think some of it is low blood pressure — I’ve always struggled to stay awake … in meetings, singing in the choir (i.e., facing the congregation as a minister gives the message and dozing….THAT’S special). Lately I’ve had friends I’m conversing with say “you’re clearly tired” as I’m simply trying to stay with a conversation. Driving pretty much anywhere requires a cold brisk water, soda, or other beverage to keep me alert. One of the things I love about working from home is the ability to take a ten minute micronap when the fatigue hits — it makes all the difference and doing it in the privacy of my home doesn’t bring with it the indignity of getting drowsy in public.

If I don’t drink caffeine (or find some other way to not get drowsy/fatigued), my professional and personal life are impacted. I guess I should make a big summarizing point in this particular italicized sentence but: I love and need coffee and would find it almost impossible to break up with it. That is all!

The Gray Areas In Dealing With Cardiac Issues Are Vexing

It is irritating and a little humiliating to try to explain a health issue others can’t see. If I had a cast on my leg or some other outwardly obvious sign that I am working through something, that would be different, but as it is, many people start every conversation with “the usual”: “So when’s your next race?” “What are you training for?” Etc. Etc. Etc. My social  network is largely comprised of runners. My social media content is liberally filled with running. The first place I head when I walk into a store is the fitness/running section.

When Running Is Bad for Your Health

Although this post has been percolating in my head (I had lots of time to think about it sitting on that curb in Southwood waiting for the golf cart (sigh)), I hesitated because I do not want it to be a whining, “poor me” post. I guess in a way it’s an attempt to put down in words the fumbling around I do when conversing about this when the zillionth person says “when’s your next race?”

I feel more keenly aware of the fact that I’ve spent years throwing out platitudes to other injured/ill runner friends: “you’ll get back to it,” “every step matters,” “people understand.” I feel aware of the challenge my father in law must feel when he is feeling faint and I’m screaming at him “PUT YOUR WEIGHT ON YOUR LEGS” because honestly, there was a moment there at Southwood on October 2 when the 1 mile back to the start line might as well have been 10,000 miles. No amount of willpower on my part would overcome the fact that my heart was done. with. ambulating. for. that. hour. DONE.

It’s a pain when well-meaning relatives say things like “well now that you’re not running but eating like a runner, there’s a weight issue.” (Yes, there is. I weigh more now than I did at the max of either of my pregnancies and my food consumption, especially the stress eating, really needs to be separated out (by me) from my runner persona.) It’s a process.

The Finish Line

This is not a post with a nice neat ending.

I guess my best advice right now is …..if your health enables you to fully engage in what you love for exercise and an outlet, do it and don’t take it for granted. If someone in your circle drops off the radar, give them an opportunity to try to process it and know that they themselves may not really be capable of explaining it or responding to their personal challenges, but they do still need you.

Their heart may still be putting in the miles even if their race reports don’t show it.

Cardiac Issues

thoughtful-thursdays4

From Human Microchip to EP Study and Beyond

In the 24 hours leading up to my EP Study on Monday, I asked myself quite a few times if it made sense to go through with the procedure, especially since my high heart rate episodes only occurred when I was running. In other words, even though the risks are minimal, is it worth having a doctor thread a catheter up through my groin into my heart in order to figure out what was going on in there and to possibly “ablate” any problem areas?

For a recap of the history leading up to Monday, click here.

Now let's talk about EP studies.

Now let’s talk about EP studies.

To get to the point of today’s blog, we will fast forward past the referral process to get to the electrophysiologist, the initial appointment with the electrophysiologist, the implantation of my loop recorder, appointment number one with the electrophysiologist’s nurse, a between-appointments phone call with the nurse where I was instructed to begin taking two baby aspirin every night (I was already taking one) and appointment number two with the electrophysiologist’s Physician Assistant (PA), where I was given the choice of medication or an EP Study with Ablation. Because I was hesitant to settle for a medication-only option (I was concerned medication would make me more tired than I already am all the time and would not yield any answers), I agreed to proceed with the EP Study and Ablation on the premise that a) at least I would have answers and b) if I did get an ablation, I would be able to return to running with a likelihood of less risk, more satisfaction, and a relieved mind.

I reported to the hospital at 7 a.m. on Monday, and did a combination of laying around, prepping (there is some cleaning with grown up baby wipes to be done), having a baseline EKG taken, having baseline vitals taken, chatting with the anesthesiologist, a visit from the PA, and a final visit from the electrophysiologist before the process began.

From an anesthesiology perspective, the goal with an EP study (at least with this team) was not to keep the patient completely “out.” I did have them promise not to share any crazy tequila stories I told while I was in and out (apparently either I didn’t give them anything to work with or they are very discreet people!). I was given oxygen. I remember nothing of the actual insertion of the catheter. I remember significant parts of them manipulating my HR to try to replicate the issues I have been having. One of the cool parts of an EP study is that they essentially “GPS” your heart. I had stickers all over my chest that were a part of the mapping process (and is it a good thing when they say they don’t have much real estate to work with?!). The anesthesiologist told me that he could tell at a certain point that I was really getting anxious (and I was trying to stay calm but I guess “trying” is a relative thing in that situation) so he put me farther out.

Fast forward to the recovery room. and beyond. I remembered how still Wayne (my husband) had to be after his catheterization, and how we had to bring Wayne’s dad back to the hospital when he began bleeding from his insertion site after a catheterization so I was determined to be the perfect patient on that front. But I think the process and technology have both improved. Although you are told to remain very still, there wasn’t a nurse yelling at me when I moved my head a millimeter (as one did with Wayne).

All of that to get to this answer:

I do not have Atrial Fibrillation (this is mostly a good thing!). My issue involves SupraventricularTachydardia (SVTs). The good news is that SVTs, even though they feel totally bizarre and abnormal, do not usually lead to adverse cardiac events or fatalities.

Dr. Silberman chose not to ablate – he found two “hot spots” that activate at around 160 bpm, but they return to normal as my HR rate escalates and several other spots activate. It was taking so much medication (isuprel) to get my HR up enough to replicate the issue that they were afraid they would run out mid-procedure and apparently there is a manufacturers’ shortage of it so they couldn’t get more. One option is a different (more involved) procedure with a balloon that can discover/ablate more surfaces at once, but that is not necessarily that obvious route to go. For now, the recommendation is that I take a beta blocker before running and keep my HR to below my zone 4.

Here are the takeaways for now:

Technology is pretty awesome

I am still in awe at what medical professionals can find out via technology. From my Garmin which provided preliminary data about the patterns of my heart rate issues, to the loop recorder that provided more specific information, to the map of my heart and its electrical patterns, we have access to so much data.

Physicians with good bedside manner are pretty awesome

I am grateful for the way in which Dr. Silberman has explained everything at each step of the way. I appreciate the fact that he respects the role of running in my sanity (even though he does say, repeatedly, “you know, you don’t have to exercise at 170 bpm to be fit”).

dr-silberman-rotated

Good nurses are pretty awesome

I am a little fuzzy on my ability to evaluate the performance of some of the nurses, but all the ones I was “with it” for were great. They were patient, answered my questions, and provided plenty of attention (along with a nifty “discharge note” (below) and a follow-up phone call the evening I was discharged. My last nurse had an interesting mantra — “be assertive” — she said it ten times if she said it once. She’s right of course but it still struck me as interesting.

cardiac-nurses-rotated

 

Remember that post I wrote about how hard it is to get a wheelchair at TMH?

I have to admit, when I remembered (duh) that I would need one of those very same wheelchairs to transport me out of my room and down to my car, I was a little afraid the staff would see my name and all of a sudden develop a very lengthy d e l a y! But my complaint was never about the transportation staff themselves, just the challenging process of getting a wheelchair for my father-in-law, and I am happy to report my chariot arrived to sweep me away from the hospital relatively promptly.

Frequent naps and permission to “take it easy” are awesome

I was told to avoid running/exercise (sigh) and not lift anything heavier than ten pounds for a week. As much as I have missed my usual high-intensity, rapid-fire life, I have to admit having permission to take it easy has its bonuses too. I have probably taken more naps in the past week than I have in the past year (or five…). I think I needed the rest.

Not running is not awesome

Double negative that may be … but if you know me, or if you have had your own period of enforced non-running, you know what I mean. All of a sudden everyone’s off-hand remarks on social media about their “quick three-milers,” “couldn’t help signing up for another race,” and “awful run but I am glad I did it” seem like they are coming from a completely different universe. My paper workout chart, my Training Peaks, and my Daily Mile are all completely blank this week. So is my endorphin quota. It’s odd and not awesome.

So much of your running mojo is in your head

This has messed with my mental status. As much as I have advocated endlessly for the power of the back of the pack, for the fact that every mile matters, for the fact that runners should all support one another, the truth is that I have felt very close to the edge of being excommunicated from the runner fraternity (and I know if anyone else said all that to me I would immediately jump on them and tell them the thousand reasons why they still belong). I’m just keeping it real here. I have finally gotten a little tiny bit of traction and credibility as a Fitfluential Ambassador and am having to work hard to convince myself I still belong.

Not running messes with your nutrition

One beautiful thing about running combined with relatively clean eating habits was that I had a little wiggle room to treat myself to “fun food” occasionally. A few weeks prior to the procedure I announced to my coach that I was “tired of logging.” although I knew what to do to maintain my weight, I also know how easy it is to wander once you are no longer making yourself accountable. Logging and reporting my food logs to my coach every night incentivized me to, for example, have salads on hand for lunches, to skip bread in the evenings, and to keep the long-term goal in mind.

And I think that’s the rub now: there is no long term goal now that I have ditched the sub-30 5K. The things I run for still exist: Gareth, Charity Miles, my team at KR Endurance, my running friends, my health and my sanity.

The challenge is getting my head (and my heart) back in it.

EP Studies

****NOTE: I really hate talking endlessly about myself like I have ended up doing throughout this cardiac health  journey. I continue because I know it has helped me to read of other people’s experiences. It’s a scary and lonely feeling to feel like “the only one” facing this type of issue. A lot of people have helped me, especially Mary Jean Yon. While I don’t feel ready to be anyone’s lifeline yet, it is important to know you are not alone, and to be your own most assertive advocate when it comes to your health. That’s why I keep talking about it. Maybe next week I’ll post about dancing unicorn kittens or something lighter!

Why I Agreed to the “Human Microchip”

I have been doing heart rate-based (HRT) training since April 2012. HRT focuses on the athlete training to certain heart rate zones rather than focusing on pace, speed, distance, or perceived effort. Read this post from RunRunLive for a great basic explanation.

Setting your heart rate zones involves a max HR test and threshold testing (at least the way I have done it). Mine have been revised since I started, but they currently are:

HR Zones

Signs of an Issue

From April 2012 through February 2013, my HRT was going just fine. The first sign of any issue was the Flash 12K on February 16, 2013, when my Max HR was 229, well above my aerobic capacity of 186. I sort of wrote that incident off as a fluke.

I became less able to call my HR issues a fluke during the Summer Trail series of 2014. Granted, running in Tallahassee in the middle of the summer is an invite to strenuous running, but it did not feel right. I had to stop and walk several times to allow my HR to come down when it climbed above 200.

As I wrote in my Turkey Trot 2014 Race Report, the HR issues became more pronounced and more frequent, especially at the Boston Mini Marathon and the Turkey Trot (then at the Swamp Forest Race on January 3, 2015).

The Process of Finding an Answer

Right before the Boston Mini Marathon, I had been cleared by a cardiologist after a ten-minute stress test and a cardiac echocardiogram. After the Boston Mini Marathon, I called him back and asked to reassess. That is when he referred me to an electrophysiologist.

Twice (at least) the first cardiologist said “at some point you may have to get a loop recorder.” Twice (at least) I said “oh if it comes to that I won’t go as far as to have something implanted under my skin.”

When I met with the Dr. Silberman, the electrophysiologist, he reminded me that “you can still stay fit without running.” (I know, all you runners out there ……. I hear you laughing at the screen!). To his credit, he also recognized that running is quite possibly saving my sanity. (Also, I contend that as a runner I avoid so many health problems that would make me costly to CHP: diabetes, blood pressure issues, problems brought on by unhealthy BMI, etc.)

He explained that the implantable loop recorder really is the best option to help him gather information. One likely diagnosis is Atrial Fibrillation (which is described here).

Since the incidents occur sporadically, some diagnostic procedures will not yield the data he needs. Therefore, I agreed to what my teammates and I have come to fondly refer to as “my human microchip.” It looks like this:

LINQ

 

(And if you want to see exactly where it is, click this link. I am not a fan of subjecting people to “wounds” or other TMI pictures on social media but by the same token if it helps with education, I don’t mind. (This picture was taken the day after implantation; it is a tiny little scar now.)

So Much Waiting

And now I wait. I wait while my microchip records (and transmits data to my electrophysiologist’s office nightly). I wait for an incident to happen so I can use my handheld “patient assistant” to mark the incident.

Patient Assistant

Next Steps

After sufficient data is collected to give the Dr. Silberman the data he needs, I have a couple of choices:

  • An ablation, in which the short-circuit is corrected via radiofrequency energy
  • Plan B (ps – I don’t know what Plan B is…)

Medication is not an option because my blood pressure is already on the low side, and most medications would exacerbate that. I assume Plan B would involve life style changes, such as less caffeine and less racing. I really don’t know right now.

Putting It All Together

This title may be mislabeled because this situation does not feel “together” yet. I can tell you the questions/concerns swirling through my mind:

  • It is strange when people describe the various heart rhythm disturbances by saying “one kills you instantly and one only heightens your stroke risk.” I simply don’t see the value of that “only” before “heightens your stroke risk.”
  • I have stopped drinking caffeine prior to my runs. In 2005, during a previous set of cardiac evaluations, Dr. Batchelor advised me to stop drinking caffeine. About a thousand gallons of Diet Coke (before I stopped in January 2013) and coffee later, I have to admit that he may not have been making a passing suggestion.
  • I am so grateful for the people who look out for me and who share their stories. For Shannon Sullivan, who was basically going to put me under house arrest until I asked the cardiologist who had just cleared me to refer me on to Dr. Silberman, for Mary Jean Yon, who has been so  helpful by sharing her story (and telling me to not be so conservative that I don’t get data!), and to David Yon who is the best, most supportive researcher you could possibly want on your side. All of them have encouraged me to a) stay healthy and b) not throw the towel in on running.
  • All of the technology involved in this process is simultaneously reassuring and question-raising. When I had my loop recorder implanted, the Medtronic representative was present. When I had my first in-office visit, he was present. What happens if Medtronic changes hands? (I know there will be contingency plans but I have seen a few awkward situations among my relatives who have pacemaker/defibrillators and can’t resist questioning.)
  • I miss running free of worry. I know I am fortunate compared to the challenges many runners face. It is simply not a relaxing or release-filled time for me in my running life.
  • I have to “let go” of so many concerns about what others think. Dr. Silberman advised if I am having an episode to lie down and get in a sit-up position to break the cycle of whatever is going on electrically for me. That just sounds like an attention-getter (but if it saves my life, who cares?). I feel self-conscious about the fact that I represent my incredible team, KR Endurance, but with the fact that my times are getting slower, not faster, what kind of example am I of the incredible work our coaches do?

I love running and the running community. Now that I have shared my situation with runner friends, people are coming out of the woodwork to discuss their own experiences. I am not alone in having a health challenge, and I know wherever this process takes me, I am fortunate to have the support of many people.

Now that I have a microchip, anyone want to put a leash on me and take me for a run?