Don’t Ever Let Your Guard Down in Chronic Town

November 19, 2010 at 2:02 pm (Uncategorized)

The Guru didn’t waste time on formalities or niceties.  He rifled through the pages of lab work and tests results from the previous six months, and announced, “You need to get a defibrillator implanted.”

Yikes.

Here I’d thought that my semi-annual visit to my sarcoidosis specialist in Ohio would be nothing more exciting than a check-up.  Maybe he’d even give me the green light to start cutting down on the toxic cocktail of drugs I take for my chronic, systemic sarcoidosis.  Instead, he reviewed the report from the Holter monitor (a portable device that measures the heart’s electrical functioning for a day or two) I’d brought with me, asked me about some of the noteworthy heart-related symptoms I’d experienced in the past few months, and delivered his verdict.

I had known that something was wrong.  That’s why I had badgered a local doctor for the Holter monitor in the first place.  For the past few months, I’d felt like my heart was skittering around in my chest.  Sometimes, it was nothing more than a skipped beat or two.  Other times, I’d feel my heart accelerate, as if I’d downed a whole store’s-worth of Starbucks espressos.  These episodes made me dizzy and bathed me in cold sweat.  Twice I passed out.

My heart’s antics were unfortunately familiar.  I’d experienced the same set of symptoms—except the passing out—in 2004, when I was first diagnosed with cardiac sarcoidosis.  Back then, the standard treatment for cardiac sarcoidosis was high doses of prednisone.  The question of whether to implant defibrillators or pacemakers was less settled.  If someone had life-threatening spells of ventricular tachycardia, there was no debate about whether to implant the devices.  But with someone like me, who presented with relatively minor rhythm abnormalities, most specialists took a wait-and-see approach.  It was thought that if a cardiac sarcoidosis patient could be induced into deadly ventricular tachycardia during a heart catheterization, then a defibrillator should be installed immediately in the cath lab.  For people like me—who had cardiac sarcoidosis, minor rhythm abnormalities, but could not be induced into lethal heart rhythms—the experts advocated monitoring the problem.

I learned in the Guru’s office that standard procedures have changed since 2004.  The idea that deadly heart rhythms could be predicted in the safe environment of the cath lab turned out to be hooey.  A few of the people “cleared” by the cath lab and sent home like me without defibrillators had the misfortune of up and dying.  Now the experts say that anyone with cardiac sarcoidosis who has minor rhythm abnormalities should have defibrillators (and sometimes also pacemakers) implanted as soon as possible.

Damn.

The local cardiologist concluded that my most recent Holter monitor was within the realm of “normal.”  The Guru disagreed.  In a 48-hour period, the monitor detected over 2,000 premature ventricular contractions (PVCs), which are extra, abnormal heart beats that originate from the heart’s pumping chambers (the ventricles) instead of from the where they typically start—the sinoatrial node.  The local cardiologist would have been right if I were a healthy 39-year old.  Then the occurrence of a few (or even a few thousand) PVCs wouldn’t be cause for alarm.  But, a couple thousand of these abnormal heart beats in someone with a history of sarcoidosis in the heart aren’t at all normal. They indicate an underlying problem with my heart’s electrical functioning.  Most likely, granulomas—the blobs of white blood cells that sarcoidosis forms—are interfering with my heart’s normal pathways.  The PVCs reveal a broader malfunction with my heart’s electrical system—one that might prove to be harmless, but one that might result in sudden death.

As much as I wish I’d gotten better news from the guru, I won’t ignore his advice to get a defibrillator implanted.  Sudden death is something I’d like to avoid.  I travel all the way to Ohio twice a year to get an expert’s take on a disease that too many other health care practitioners don’t fully understand (or don’t bother to keep up on the latest guidelines).

I’m home from Ohio.  I have set the ball in motion to get the defibrillator, scheduling the first appointment with the first doctor in the chain of referrals that will end in finding the electrophysiologist who will implant the device.  I am channeling my anxiety about the surgery into the mostly bureaucratic process of finding the right surgeon.

Whenever my heart skips a beat, I tell myself not to worry, that it’s normal.  And then I remember that it’s not.

2 Comments

  1. barb said,

    So glad to read this and know that I won’t ask you to explain it to me. As a sister heart pvc and svt thrower I am familiar with your descriptions. I see in your case that if the granualomas have implanted in the wrong places your heart may not find its way back to a reset place. I do know some neat tricks for calming the race…happy to share them with you. In the meantime, maybe use Bergie’s stuff called “Cardionorma” till you get the bionics installed. Works wonders for me. And, remember, we’ll all be with you, every beat and every step of the way.

  2. Paul said,

    Mmmm bionic heart……does that let you run real fast but look like it’s in slow motion?

    Seriously – Hang in there

    Paul

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