The Procedure: “Ready for Prime Time”
AA
I wasn’t the only one waiting anxiously at Pam’s bedside in the Hopkins ICU that day in March, 2002. She’d been wheeled straight over from the cath lab, heavily sedated. As I held her hand and mulled over just how to gently break news to her when she woke up that things… well, things hadn’t gone exactly according to plan, various surgeons were sidling up to the bed, looking things over, checking monitors, reading strips. Just checking, they’d say… just checking.
In the brochures about Catheter Ablation for Atrial Fibrillation at Johns Hopkins, there are pictures of smiling, grateful patients sitting up shortly after the procedure, watching television or entertaining visitors. Looks like you don’t even have to spend the night at the hospital.
A 1999 Hopkins press release touting catheter ablation for arrhythmias other than Afib announces that “the first comprehensive, multi-center study of the techniques effectiveness is now complete. It was led by Johns Hopkins director of electrophysiology Dr. Hugh Calkins.” The procedure is represented as being proven and painless, safe and effective:
“A doctor guides a catheter with an electrode on its tip to the source of the problem. It then fires a painless burst of energy, ending the electrical misfires. Problem solved. The first comprehensive, multi-center study of the technique’s effectiveness is now complete... Johns Hopkins director of electrophysiology Dr. Hugh Calkins. The basic findings of the study were that catheter ablation is in fact a safe and effective procedure. Overall, on over a thousand patients, it was successful 95 % of the time, had a 6% recurrence rate, and a 3% incidence of complications.
Equally rosy scenarios are painted on a Hopkins website about the Afib procedure, entitled Finally a Way to get Rid of Afib, published in 2003, a year after Hugh Calkins nearly killed my wife.
It tells the literally heart-warming story of one David Erdman, a rugged outdoorsman who was “sure he had climbed his last mountain” because his Afib was getting worse. After an episode of heart palpitations during a recent hiking expedition caused him to fall by the trail side, Erdman was sure he was going to die:
“But Erdman’s cardiologist felt differently. He’d heard that electrophysiologist Hugh Calkins was offering a new technique to treat A-Fib at Hopkins and encouraged his patient to give it a try. Calkins would thread a catheter from Erdman’s leg up to his heart and, using a high energy probe, burn the tissue that was causing the problem…
Results have been encouraging. The ablation has been able to cure 80 percent of the patients Calkins has treated for intermittent A-Fib and 50 percent of those with chronic A-Fib. The secret to success, Calkins says, is knowing how to use MRI and a special catheter-shaped like a branding iron and armed with some 20 electrodes- to zero-in on the disruptive tissues in the four pulmonary veins. “Target the active pulmonary vein and the success rate jumps to 90 percent,” he says… “The procedure is ready for prime-time,” Calkins says. “Physicians and their patients should know about it.”
Essentially, Hugh Calkins claimed a cure for atrial fibrillation in 2003, and the last word from Hopkins is that “Erdman hasn’t experienced AFib in a year and currently is planning a six-day backpacking trip to Mt. Whitney in California’s High Sierras.”
So Pam and I had been living in Brochure Land, only she hadn’t wakened to it yet. In Brochure Land, the outlook is always sunny, bright and confident. But in the medical journals, which patients don’t read because they trust their physicians, the landscape is much grimmer, and strewn with complications and bad outcomes. This dispatch from Hugh Calkins was written in 2005, three years after he nearly killed my wife:
“… there has never been a procedure in the field of electrophysiology with such a high complication rate. There have been more than a handful of deaths from this procedure, and as more and more people start doing it and are on that learning curve, it could be a bit of a mess.”
Indeed.
“Delay would be dangerous, potentially catastrophic…”
As for Pam’s chances of surviving her early contribution to the learning curve, it may have been his instinct to soften the blow, or it may be he didn’t know any better, but Calkins kept telling us that the mitral valve repair could wait until morning.
Surgeons, however, were not so sanguine. I could hear the voices in the hall. A doctor’s chart note tells it:
“CCU Attending…
Plan: Urgent MV repair/replacement… I believe delay would be dangerous, potentially catastrophic…”
I was being told with increasing frequency that while this surgery was not an emergency as such—and Pam was at liberty to refuse—she would die if she elected to forgo the pleasure.
So now the plan was this: as soon as Pam came around, expecting me to hand her some street clothes so she could come home, I was to instead hand her a clipboard with a consent form to sign, authorizing surgery to repair her newly eviscerated heart.
“And we can’t wait too long. If we don’t do this right away, she will not make it,” advised a fatherly surgeon. “OK,” says I, a bit stunned, wondering why, if it’s a life and death situation, they don’t just go ahead and fix it. Like right now.
How did we get here? As I was pondering this, Calkins slid the curtain back. He had a question for me. Did I know of any reason why Pam shouldn’t take blood thinners on a daily basis? Did she have bleeding stomach ulcers or anything like that? Was it OK for her to be on blood thinners permanently? Because there was a chance maybe that they couldn’t fix the valve, they might have to replace it and, ah… you wouldn’t want to have a mechanical heart valve in you without taking blood thinners, you know, because of clotting and all … Of course, there are pig valves, porcine valves…
I chose my words carefully because, after all, I hadn’t been to medical school. “She doesn’t have bleeding stomach ulcers as far as I know… So, I guess I wouldn’t let that stop me…” and Calkins disappeared, leaving the curtain wide open. I started thinking. Pam had been talking to her doctor about a daily aspirin and her stomach, but it hadn’t occurred to me while the professor was there.
Me. I suppose that was the first time I started looking around and wondering if this was really the famous Johns Hopkins Hospital – America’s Best Hospital. And as it turns out, if Calkins had bothered to read Pam’s chart he’d have seen his own note that “she has a history of GI bleeding.”
I especially needed things to go well, because smooth assurances notwithstanding, Pam was a bit apprehensive about undergoing this procedure—or any procedure for that matter. She was a cardiology nurse and knew full well that stuff happens, which is why we wanted her in the most experienced hands. I had encouraged the decision to go to Hopkins. I kept telling her she was going to the best hospital in America.
She told me a joke on the drive up there:
A frog phones the Psychic Hotline and is told, “You are going to meet a beautiful young girl who will want to know everything about you.” The frog gets excited at this prospect. It says to the psychic, “That’s great! Will I meet her at a party or what?” “No, not at a party,” said the psychic. “Next semester in her biology class.”
∞
This story is loaded with coincidences: I met Pam because she was a nurse in the ICU where my father took four months to die. He died from a series of medical mishaps that started with an overlooked staph infection picked up from a previous hospital visit—an infection that eventually destroyed one of valves of his heart. Ron Peterson is the Chief Executive of Johns Hopkins Medicine, and Dr. Peter Pronovost is the Hopkins Safety Guru. Both of their fathers died in hospitals because people made mistakes. Ronald R. Brody, who was president of The Johns Hopkins University at the time, also sat on the board of directors for Medtronic, which manufactured the ablation catheter used on Pam.
∞
When I met Pam she was in really terrific shape—and even more so about six or seven years earlier when she went to Jackson Memorial Hospital in Miami for an EP study to be performed by Dr. Richard Luceri. The way Pam recounts the story, it was a theater-in-the-round sort of deal: “I was naked on the gurney except for a tiny hand towel covering my breasts and one laid between my legs. Young men in white coats began lining up behind the glass walls of the theater.”
Pamorama.
Pam said “two EP fellows entered the lab and began probing my groin, slowly moving their fingers, pressing this way and that. Then they went and got the big needle and they started sticking me with that, looking for the femoral vein. They were at it for 20 minutes and I was crying when Luceri came into the room.”
Luceri whisked the boys aside and stuck her once and true and finally the catheter was properly placed. The whole episode had the feel of a skin flick, Pam said.
“I was taught as a nurse that before I ever walked into a patient’s room, I was to always respect and protect a patient’s privacy, modesty and dignity, and that’s what I did in my 20 years of nursing,” Pam told me. “It didn’t matter who was around or not around. It didn’t matter if I was alone in the room bathing the patient, I protected their privacy. I protected their dignity and their modesty, it didn’t matter if they were conscious or not. It didn’t matter if they were demented or delusional or anything else… I saw it as a basic human right, and one that I would expect for myself. Yes, and that is how I would expect to be treated, but it is not how I have been treated.”
Professor Luceri, who would later join Hugh Calkins in the TASER Stun Gun business, found nothing amiss with my wife’s physiology and dismissed her symptoms with that catchall diagnosis used by male doctors who find themselves at a loss: female hysteria.
Pam’s condition was real. Her quest for relief from cardiac symptoms eventually led her to Johns Hopkins and a decision that nearly cost her her life, a decision based on misplaced trust in a doctor. Her symptoms were never so severe as those of Dave Erdman, the fabled mountain climber, but alas, Pam’s cardiologist too had heard about the wonders being performed by Hugh Calkins at his lab in Baltimore. So I took her up there.
And now here in her hospital bed she opened her eyes and she smiled – and I brushed her hair from her forehead.
“Listen,” I said.
