Big Brother is Watching…My Heart




That’s the sound of my heart beating. Or at least how I think you would spell it out.

Sometimes it sounds more like this:

Bum-Bum Bum-Bum.

Bum-Bum Bum-Bum.

Bum-Bum Bum-Bum.

And other times it’s really getting a workout, like this:

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

It doesn’t slow down long enough for the –mp –mp –mp parts.

What strenuous activity am I undertaking when this speed up happens, you ask?

Um…Sitting on the couch? Standing in line at the grocery store? Walking from the car into the library?

As in, nothing special.

In fact I could be doing this, and it would still happen:


I have 9 million pictures of Suki sleeping like a person with a pillow and blanket. She does this all the time #LoveHer

That’s just how it is, having a POTSy heart.

To clear up a misconception, POTS is not a heart condition. You will not find it on a list at the American Heart Association or any similar organization. It is an Autonomic Dysfunction disorder, a problem that starts in your autonomic nervous system, and then affects all of your bodily systems from there. Because your heart is SUPER IMPORTANT and heart function, and therefore problems with that function, are highly observable, POTS patients more often than not see a cardiologist as their primary “POTS doc”. Hence Agent Coulson’s visit to Iron Man on Friday (see Monday’s post, Agent Coulson’s Field Trip).

Things that are highly observable about your heart function (or my heart function, or anyone’s heart function):

Heart Rate/Pulse: You can count how many times your heart beats in a minute, simply by placing your fingers on the inside of your wrist or side of your neck at specialized “pulse points”. Any one with a stethoscope can listen to a heart beating and count the pulse that way. If your heart rate is higher, your heart is working faster and harder; slower, of course means the opposite.

Circulation: Checking the pulse in your extremities, most often the ankles, can give an idea whether or not your blood is circulating to those points. If your pulse is slow in your ankles, that means that they are not getting enough blood flow there. You can also see this, just by looking at your feet, because they will be a weirdo shade of gray or blue. If you’ve got too much blood in your feet, they’ll be purple or reddish, and this usually means that the blood isn’t making it’s way back up to the rest of you (a hallmark of POTS).

Blood Pressure: BP is made up of two numbers- the top number is called Systolic, and it tells you the pressure as your blood moves through your arteries WHILE your heart beats (the contraction). The bottom number is called Diastolic and measures the pressure BETWEEN beats (when the muscle relaxes and refills before contracting again). Blood pressure cuffs are everywhere, at doctor’s offices, at supermarkets, on my dining room table… So this is really easy and quick to measure and see.

Electrical Activity of your heart: Seen in an EKG, the electrical activity of your heart shows the rate and regularity of your heartbeats. I once read an interesting article that in a normal patient’s EKG, there is a LOT of variation, as their heart reacts to its environment (YOU). In a POTS patient, the EKG is looks too perfect- there is not the same variation, as a POTSy heart does not react efficiently to environmental stimulus. This could be the reason that blood pressure drops leading the heart rate to sky rocket- the heart is just slow on the uptake of realizing a change (usually in body position) has been made and doesn’t react to it the way it should. As soon as I locate that article again, I’ll post a link (Nic note: If you Google POTS EKG, it immediately will tell you what an EKG of someone smoking marijuana looks like. *Sigh* Thanks a lot, acronyms)

Your actual heart: Yep. And it’s weird. You know how when you see a sonogram of a baby, and it’s weird and wonderful, and kind of blows your mind, because when you are looking at a pregnant lady, you aren’t necessarily thinking about what the baby looks like in there? (Am I the only one who thinks of these things?) It’s kind of like that. You know you have a heart. Everyone does. But you just aren’t walking around thinking about what it looks like in your chest cavity, and then you go to the cardiologist and they order an echocardiogram, which is essentially a sonogram of your heart, and they bring it up on the screen and it’s like WHOA. So that’s what’s going on in there.

Because, not to burst anyone’s bubble, but your heart doesn’t look like this:


It looks like this:

Heart iStock pic (1)So yes, a heart is a wonderful and magical thing that we can look at and marvel over. Doing so gives us a lot of information about how we feel. It doesn’t just apply to POTSies, but everyone. If your heart is beating, there’s a way to watch it, hear it, and feel it do so.

On Friday, my cardiologist decided that while I am often up close and personal with my heart and how it’s feeling, we needed to get just a bit more information about it.

Enter, the ZioXT, a continuous heart monitor that looks like this:

IMG_0693This sucker is going all Big Brother on my heart as we speak, watching its every move- well, beat. All day, every day.

It’s supposed to stay put for 14 days. Then I send it away to a lab in Somewheresville, Illinois where they will interpret my data and send a report to my cardiologist. The hope is to get a better sense of what my heart is really up to, as if it were a secret agent with a hidden agenda (I would not put this past my heart- he often goes rouge).

Personally, I hope that my heart is really this goofy guy:

strong-heart-cartoon-vector-illustration-32226984And that his response to his recent overactivity is somewhere along the lines of, “Hey girl, sorry I got overzealous with all that pounding, I’ve just been pumping iron (Literally!) to make YOU stronger!”

But that, of course, remains to be seen…


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