A recent appointment with my Adult Congenital Heart Defect Cardiologist in Atlanta was going wonderfully, right up to the moment I got the ECG. (ECG stands for Electrocardiogram; it used to be popular to refer to it as an EKG, but ECG seems to be the favored term now.) The doc came back into the examining room carrying the ECG sheet, stroking his chin and saying “Hmmm….”

I cringed. Long ago, I learned that “Hmmm…” is doctor-speak for “Ut-oh.” Finally after a few moments, he says, “Looks like you are the proud owner of an Atrial Flutter.”

Proud owner? Yeah, right! Normally, the Atriums (the two top chambers of the heart) contract a few milliseconds before the ventricles do. With a Flutter – you can have an Atrial Flutter if the problem is in the top chambers of the heart, or a Ventricular Flutter if it is confined to the lower chambers – the two cycles become unsynchronized. One is slightly faster than the other, and the two halves of the heart aren’t working in tandem anymore. When it is mild it is a Flutter, and when it is more pronounced, it is a Fibrillation. Flutters can turn into Fibrillation, and a Fibrillation can be deadly.

“Double your dose of Amiodarone and have another ECG in two weeks,” the doctor instructed. “Have them fax the results to me. If it’s good, we’ll set up an appointment in six months.”

And if it is not?

“Be prepared to come down within a week, and perhaps stay a few days.”

There’s no need to worry about an ECG because nothing you do can affect the test. So in two weeks, I get the test done and have the results faxed to the ACHD Doctor. Later that day, the telephone rings: Be in his office on Thursday, I’m scheduled to see the Electrophysiologist.

I have no idea what an Electrophysiologist does, so I look it up. According to the dictionary, he “studies the electrical system of the body, concentrating on the heart.” Ok, but there is no description of exactly how he conducts his studies. I’d like to know if he is going to plug an extension cord into a live power source and then hand me the bare wire ends. “Here, hold this,” he tells me as he watches all of my hair stand on end. Things like that you just need to know.

Thankfully it isn’t that bad. Electro-Doc (my nickname for him, since Electrophysiologist ties my tongue in knots) starts by giving me a 12 lead Electrocardiogram. It works just like a regular ECG does, but there are a few more little wires running to your body. He also listens to my heart for a while longer than the usual exam, and questions me pretty closely about my health. After about half an hour, he excuses himself to consult with my regular Adult Congenital Cardiologist. The Adult Cardiology Clinic normally sees patients on Mondays and Wednesdays, but Electro-Doc is only in area on Thursdays. And on Thursdays, my doc is in an entirely different hospital. Thanks to the cell phone, this fact really isn’t a problem.

The minutes later he is back, and admits that he’s in a bit of a quandary. With an Atrial Flutter I should feel dizzy and lightheaded when the Flutter kicks in. I don’t. And I should be able to feel a Flutter when my heartbeat changes. I can’t. So after putting their heads together, he and my Adult Congenital doc have decided (drum roll, please) not to do anything at this time.

That may sound like a cop-out, but I don’t see it that way. Electro-Doc is going to proceed by how I’m feeling, not what the ECG tells him. The evidence – the ECG, his training, and what he’s hearing through his stethoscope – tell him that I am having an Atrial Flutter. But I’m telling him that I don’t even feel it. so instead of paying attention to the machinery, he’s going to pay attention to me…what a novel idea!

“Since it doesn’t seem to be affecting your heart rate, stop taking the Amiodarone,” he says. “Get an ECG in two weeks, if it looks the same, we’ll just drop that drug altogether.”

With that statement, Electro-Doc has just become my new best friend! Amiodarone is a very effective anti-arrhythmia drug… but it has some nasty side effects. It can cause damage to your eyes, your liver, your lungs, and your thyroid.

Every year that you are on Amiodarone, you must get an eye exam to determine if it has started to damage your eyes. Take a friend with you; they will put those drops in your eyes that cause your pupils to expand. They only expand your pupils for a few hours but during that time you are very sensitive to light and your close-in vision is worthless. Good luck reading a book or a magazine – or a dashboard, for that matter.

You’re also due for a breathing test every year if you are taking Amiodarone. You sit in a small circular box- actually a tube – about the size of a phone booth. (Remember those?) There is a breathing tube mounted in front of you; usually adjusted to be about a half inch higher than your mouth, so you have to sit up nice and tall to place your mouth on it. The technician will tell you to do various breathing exercises. A favorite one is “Take a deep breath and hold it, and when I tell you blow it out as hard as you can. Ready? Deep breath… hold it, hold it… now BLOW! Keep blowing, empty your lungs!” You actually blow out so much air that you involuntarily begin to cough before you can draw a breath. You’ll also see the computer generate many cool-looking graphs and charts while you are doing your breathing exercises, but you won’t have a clue what they mean. Take a friend to this test, also; after an hour and a half of various breathing exercises you are usually exhausted. It’s not unusual to nap in the car while heading home.

Your liver and thyroid are checked by blood tests. That’s nothing new to a ACHD patient, so you just roll up your sleeve a few more times a year.

My two-week ECG reading was the same as it was before Electro-Doc told me to quit taking the Amiodarone, so I no longer take that drug. But that doesn’t mean it’s gone. It can take as much as 100 days (over 3 months!) from the time you stop taking it for it to be completly gone from your system. By my count I’ve got about two more weeks, and then that nasty stuff is gone… hopefully forever!


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2 Responses to “Electro-Doc”

  1. Crystal @ Noah's Adventure Says:

    I don’t want to sound insensitive or rude (so if I do, please forgive me) but I am curious if a transplant might ever be in your future? Have your doctors ever discussed that with you? As you know from my blog, Noah was unable to live very long with his CHD and needed a transplant quickly. So long term serious CHDs such as yours are very interesting to me.

    BTW- I am VERY happy to hear that you are feeling well and might get to come off that nasty med.

  2. Steve Says:

    Oh, I am not offended by your question at all!

    When my chest was opened for my third operation, scar tissue that had formed adhesions with the back of my breastbone was torn. I bled so badly that it was impossible to carry out the planned operation, the surgeon had to concentrate on saving my life. And because all that scar tissue is still there, it pretty much means that I’ll be having no more operations. The new robotic surgery – going in with just a couple of tiny probes and a camera – shows promise if I ever need another operation, but opening me up enough to remove my heart and insert a new one is impossible with today’s technology. (See my post titled “Don’t let the Water get into the Boat”, posted 9/11/2008 for more details)

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