I was very scared, shivering as much from fear as from the chilly room temperature. I was waiting on a gurney at Brigham and Women’s Hospital to be wheeled in for a catheter ablation, an invasive cardiac “procedure.” (Ah, the euphemisms.)
In a totally bizarre twist of fate, I had several weeks earlier interviewed Dr. Laurence Epstein, chief of the cardiac arrhythmia service, in preparation for a column I was working on about new treatments for arrhythmias.
He had shown me his very cool, animated PowerPoint presentations and explained the details of the procedure. As a medical writer, I was fascinated. The process involves inserting catheters through veins in the patient’s groin, snaking them up into the heart, then using the wires to record the heart’s electrical activity – from the inside. Once this activity is “mapped,” the catheters deliver radio frequency waves to ablate (i.e., kill) the clusters of cardiac cells that trigger the abnormal rhythms.
As Epstein showed me his pictures and scholarly articles, I casually mentioned that, once a year or so, I got tachycardia – very rapid heart beat. He instantly drew me pictures of what he guessed was wrong – SVT, or supra-ventricular tachycardia, which affects an estimated 500,000 to 1 million people with varying severity.
Like many of these people, I had probably been born with two electrical pathways through a key switching station in the heart, the atrial-ventricular (AV) node, instead of the normal one. In people like me, electrical signals from the right atrium (one of the upper chambers of the heart) that tell the heart when to beat sometimes go down the wrong pathway and then back up the normal pathway, creating an electrical circuit that causes the heart to beat very rapidly.
“We can cure that with catheter ablation, you know,” he said. “Great,” I said nervously. “If it ever gets worse, I’ll be back.”
Several weeks later, totally out of the blue, it did get worse, much worse. I’m pretty fit – I either swim a mile or do 10 miles on my exercise bike nearly every day. But suddenly, I couldn’t walk a block without sending my heart rate up to 190 beats a minute. Even just washing my hair in the shower triggered it. I was fast becoming a cardiac cripple, afraid of climbing even one set of stairs lest I become short of breath or pass out.
The whole thing was frightening, even though, rationally at least, I knew that SVT was not life-threatening.
But fear and discomfort weren’t the only things I had to cope with. Suddenly, I had a brand new, tricky role: Patient. On the plus side, telling people about my unexpected medical problem meant that I got a huge amount of support from friends.
But becoming a Patient also meant that I instantly became the target of masses of unsolicited advice from people. I was a Rorschach ink blot upon people could now feel free to foist their pet theories.
Interestingly, the doctors I talked to – both friends who are doctors and doctors I consulted for this- were uniformly terrific listeners, contrary to the bad rap they often get. They listened calmly, respectfully, and took me seriously. When I asked, they offered advice, including one doctor-friend’s very useful mantra, “Stay cool.”
My close friends did all the right things, too. They called during the interminable weekend while I waited to have the procedure. They emailed. They hugged. They brought flowers, and excellent squash soup. But most important, they neither pooh-poohed my problem nor rushed in to solve it. They had a natural way of simply listening, with attention and kindness, taking in to their own hearts what I was going through, without trying to take over or tell me what to do.
On the other hand, I rapidly came to the conclusion that my friends are pretty special because a number of other people were truly awful at listening and giving support. Their insensitivity ended up putting the burden of patience and diplomacy on me, as a tried to fend off unsolicited advice diplomatically – at a time when I had little patience to spare.
For instance, some people couldn’t stand to let me finish before interrupting with their own horror stories.
Others insisted, quite adamantly, that my problem must be “stress.” This was especially annoying, first, because it seemed to imply that my arrhythmia was my own fault and, second, because it seemed to invalidate the reality of my symptoms, which had been confirmed by cardiac testing. As one friend put it, “Telling someone they sound stressed blames them. Saying, ‘What a stressful situation you’re in’ doesn’t.”
Sure, stress can sometimes boost the chances of getting some diseases, mostly notably, the common cold. But it shouldn’t be the explanation of first resort, partly because it blames people and partly because lots of people get very stressed and never get sick.
Indeed, military studies show that soldiers discharged during World War II for neuroses had no high cancer rates 24 years later than their mentally healthier comrades. And a report in the November 15 issue of Cancer shows that even extreme stress (such as losing a child) is not a risk factor for cancer.
If some people were too eager to blame the victim, others were almost too kind – so eager to DO SOMETHING that they trampled a bit on my autonomy, not giving me the open space to decide what concrete help, if any, I really wanted.
Some people, I discovered, also seem programmed to pounce on someone else’s illness as an opportunity to promulgate their religious views. Several years ago, when a dear friend of mine got a bad diagnosis, one woman actually said to me, “It’s up to God, not the doctors.” Whether this is true or not, it was her worldview, not mine. Which meant I had the burden of fending it off, as tactfully as I could.
Why are some people such naturally good listeners and others find listening so hard? I wondered aloud about this with my across-the-street neighbor, a psychiatrist, in the count-down days before my procedure. His conclusion makes sense: “When you tell people how helpless you feel,” he said, “they feel helpless. They can’t stand feeling helpless, so they jump in with advice.”
Mercifully, the big day came and, scared though I was, the procedure was substantially less awful than I expected. The nice guys with the great drugs konked me out briefly while they inserted the catheters and when I woke up (the type of anesthesia I had is called “conscious sedation”) the procedure was already underway. I could feel the arrhythmias as Epstein and his team intentionally triggered them. But none of these was anywhere near as disconcerting as the ones I’d been having spontaneously. I also knew that they could stop any arrhythmia at any time, a huge comfort.
The actual ablation felt a bit hot from my left hip bone to my left collar bone, but not uncomfortable. In fact, I found I was able to chat with the nurse through much of the procedure. I was also lucky. Sometimes, catheter ablations take three to four hours or longer, but mine was quick – an hour and a half.
Then it was OVER! I was ecstatic. I had to lie still for four hours so the puncture wounds in my leg veins could begin to heal, but that was easy.
I went home that same night, feeling terrific. No more tachycardia. No more worries about walking, or climbing stairs. Not even a hangover from the drugs.
I had trusted Epstein and his team and they were magnificent. Thanks to them, I could trust my own heart again.
As for the creepiness of researching a medical problem, then actually getting it. That’s solved, too. I’m writing about hangnails and pimples from now on.