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!

Fred’s Drive-By Shooting

When Mama Kat proposed the following writing prompt a few weeks ago:

Write a 26-line poem using all the letters of the alphabet, where the first line starts with the letter “A,” the second “B,” the third “C,” etc., culminating with the final line starting with “Z.”

I knew I had to give it a go! We are at the starting line of my effort — see you at the finish!

Flash 2015 12K Race Shirt

Flash 2015 Race Shirt

At the 7.2 mile mark of my 7.46 mile race yesterday, I was sad that my heart was

Beating SO fast that I had to stop to

Collect data via my patient assistant, after which I

Decided to walk the last portion of the race

Except the

Finish line.

Grouped around the finish line were the volunteers and

Huddled clumps of finishers and supporters braving the cold to see the last runners

Ignite their muscles for their last victorious sprints.

Just after putting the patient assistant away, my mind

Kept grappling with the fact that I had not taken

Lots of pictures before the race like I usually do; no flat

Mama for my Moms Run This Town Facebook Page or Instagram,

Nothing. So many missed

Opportunities to share my excitement with friends and raise awareness for the

People for whom I am running the NYC Half Marathon on a date that is

Quickly approaching! Our

Running

Stories, though, are much deeper than pictures can tell. Even so, imagine how

Tickled and1585 Paula Kiger

Utterly surprised I was when race photographer Fred Deckert pulled up in his

Vehicle as he was leaving and did a “drive-by” shooting

Which resulted in a picture from day

XXI in February 2015 that has a bit of a “drive by blur” effect

Yet allows me to share my

Zeal for making every finish line count!

Finish Line Count

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?