Through Thick & Thin

One patent's journey to regular heart rhythm

During my initial appointment with cardiologist Christopher Stees, he paid close attention when I told my story. My first known episode of atrial fibrillation (AFib) had been eight years earlier, in 2007, at age 56. At the time, I had dismissed it as an isolated occurrence. Some might call that denial.

About five years after that incident, I happened to volunteer for a medical study focusing on lungs. Along with the examination of my lungs, which were in good shape, I had EKGs, some of which showed AFib. The study doctor advised me to see a cardiologist, but I still said my problem was idiopathic, rare and isolated. Some might call that avoidance.

Within another year or two, I was experiencing ongoing fatigue, frequent palpitations and general malaise. I sometimes felt as if my chest held a little pinball machine where my heart should be. Unable to trust my heart, I no longer felt like myself.

I was also seeing television commercials for Xarelto® and similar blood thinners. Surely if celebrities were taking care of their AFib with medications, I should do the same.

No longer able to deny or avoid my condition, I took the Goldilocks approach to finding a good cardiologist. The first one I saw seemed overly concerned about sleep apnea. The second did little to help me understand what was going on with my heart or what to expect from the pills he prescribed. I knew that lack of communication wouldn’t work for me. I needed to feel like my doctor and I were working as a team to make me as well as possible.

After Dr. Stees, my third cardiologist, listened to my story, he told me he wanted to start by getting my heart into normal rhythm. I

knew I had found the right doctor. From his resume, which included board certification in Clinical Cardiac Electrophysiology, it was clear that if anyone could get me into normal rhythm, he could. He had an obvious passion for his profession and, not only did he listen closely, but he was good at explaining just what was happening with my crazy heart in terms that made sense to me.I could work with him to do my part to get well.

Human hearts usually beat at a fairly steady pace, controlled by electronic impulses from the area of the heart called the sinus node. AFib occurs when additional electronic impulses come from other areas of the heart, causing the heart to beat chaotically and irregularly. The upper chambers of the heart, the atria, beat out of time with the lower chambers, the ventricles.

As if the heart were constantly trying to catch up, the heart rate increases. Meanwhile, some of the blood that should be pumped from the atria to the ventricles may stay in the atria, form a clot and travel to the brain, causing a stroke.

AFib treatment can focus solely on symptom control. Blood thinners reduce the risk of stroke from an irregular rhythm and other medications slow the heart rate, but they don’t eliminate the fibrillation itself. Other treatment seeks to eliminate the AFib.

Like the other doctors I had seen, Dr. Stees began with the simplest, least invasive approach. He adjusted my medications. But I could see that the medications alone hadn’t returned my heart to its normal rhythm because I was measuring my blood pressure at home and often saw “IHB” (for irregular heartbeat) on my blood pressure monitor. Even though my instrument was not professional grade, when I saw IHB day after day, I knew I was in trouble. Apparently, while I was practicing denial and avoidance, my AFib had become persistent.

Dr. Stees suggested that I have a cardioversion, so I could experience how much better I’d feel with normal rhythm.

Even though it sounded scary, from my point of view, this clinical change of heart rhythm seemed fairly simple. It sounded scary because the doctor uses controlled electronic shocks to restore it to a normal rhythm. It probably seemed simple largely because I was under sedation , so I didn’t feel a thing during the procedure, and I felt fabulous afterward. Mine was done in the cardiac catheterization lab at the hospital. I was in and out within four hours.

When my irregular rhythm returned after a few days, Dr. Stees advised me to have a catheter ablation. Since I had really liked the feeling of being in normal rhythm, I was all in favor of an ablation.

An ablation is a much more complicated, invasive, resource-intensive and ambitious procedure than a cardioversion. Dr. Stees told me about it. In doing additional research, I found a YouTube video to be especially helpful.

I felt confident going into the ablation, especially with the multitude of clinicians surrounding me. Dr. Stees and the anesthesiologist both had their nurses. I had a nurse and there were two technicians from the mapping company, the outfit behind the cutting edge (pun intended) technology that allows the doctor to see what he’s doing without cutting into the chest.

I felt nothing while I was sedated, but I was surprised — not in a good way — at the aftermath. While the patient stays overnight in the hospital, the sheaths through which the catheters enter the veins and arteries have to be pulled out, leaving behind puncture wounds. Once the puncture wounds have sealed, for an AFib patient, the blood needs to be thinned again to reduce the risk of a stroke.

As this was going on, I came out of the anesthesia, but I had to lie flat on my back, just as I had before during the ablation. The pain of putting pressure on my lower back for such a long time was excruciating.

The back pain subsided as soon as my blood had thinned. I could move around again, but, unfortunately, my heart’s normal rhythm didn’t endure.

Over the next few weeks, as I was tracking my heart function on a chart, I was giving myself lots of A-OK ratings, even though the device occasionally showed an irregular heartbeat. But I wasn’t paying attention to my resting heart rate, which was often around 100 or higher.

We tried cardioversions a couple of times, but the EKG showed I had atrial flutter (a-flutter), which I think of as a “regularly irregular” heartbeat. It is, in a way, as if the blood is taking a little detour — the same one(s) with every heartbeat. As with AFib, the heart beats faster. In my case, it turned out that some blood was making a never-ending loop around a vein. My mental picture for this condition is an old-fashioned rotating barber’s pole with red and white diagonal stripes. It’s a fitting image since early barbers also performed bloodletting.

The video I had watched mentioned that some patients need multiple ablations. Dr. Stees said that doctors like to err on the side of caution instead of being overly aggressive when performing ablations. While watching the video, my denial crept in again. I was pretty certain I would not be one of the patients needing a second ablation. But I was wrong.

I went into my second ablation, which was for a-flutter instead of AFib, even better prepared. I brought along a little pillow for lumbar support. When my procedure was delayed, I paced the floor instead of lying down the whole time. I told the nurse that I wanted pain medication as soon after the procedure as I could have it, resulting in a much more comfortable night.

Since that second ablation, my crazy heart has been in normal rhythm for more than three years. After about 22 months, I was weaned from one medication that helps keep the heart in normal rhythm. My daily routine includes taking my other medications, monitoring my blood pressure and getting out for a good one- to three-mile walk. Energy and joy have replaced my general malaise and I feel like myself again.

I’m thankful to be alive and well despite my denial and avoidance. I’m thankful for miracle drugs, modern medicine and good insurance. And I’m particularly thankful for the expertise and dedication of Dr. Stees and other health care professionals who were more persistent than my AFib.

Photo shows me (far right) at Shakespeare in the Park with some members of my care team.