Collateral Damage: A Patient, a New Procedure and the Learning Curve

This post from an atrial fibrillation support group:

“I had an ablation at Johns Hopkins this past week and am very upset at the outcome. I haven’t had any [afib] symptoms but experienced severe shortness of breath.  After xrays and tests it was discovered that the phrenic nerve was damaged and I now have parylasis of the right diaphragm. I have a continuous dry cough and such SOB I can’t lay down to sleep. I can’t even sniffle.

“I’m told if it doesn’t resolve in 24-48 hrs [which it didn’t] that it may take 3 months to a year to recover and that is not guaranteed.. I’m very dissappointed and confused. I’m also on amiodarone and worry about lung involvement with a weakened respiratory system. I was released after 4 days and an appointment for 3 months from now. I don’t know where to start to figure out what I need to do now to make this better.”

That’s what happens when you get clipped at a teaching hospital—the bum’s rush. This was supposed to be a safe and minimally invasive outpatient sort of procedure, and here you are at home after an unexpected 4 day stay at the hospital; wounded, scared and confused, with more questions than answers and hardly able to breath.

The person who caused this situation is Dr. Hugh Grosvenor Calkins, who is,  according to the victim of this story,  the best doctor at the best facility in the land. That is what they would have you believe, and that is what most of us do believe. People want to believe it, and once you’ve put your life into the doc’s hands, you have got to believe it.

As for the complication, Dr. Calkins has reassured you that he himself did the procedure and that it was a very rare thing that happened in your case, so rare that he didn’t think it worth mentioning. And actually, when you think about it, it’s sort of your fault because your anatomy is different than everyone else’s. Your atrium is smaller than a normal person’s, or the walls of your heart are thinner.

“I was informed of many side effects but not that one. When I asked why I wasn’t informed I was told it is rare.

“Also talking to the radiologist and Drs. and looking at the ct scans and TEE results I have an abnormal heart anatomy. Things are not where they are supposed to be.

It makes you feel bad somehow, that America’s Best Hospital has deemed that you have odd body organs.

Maybe Hugh Calkins is behind in his journal reading, otherwise he would have seen that phrenic nerve injury is “a well-described complication of AF,” and he would have read about “currently available tools to avoid the complication.”  Or maybe a doctor who was training for his fellowship in electrophysiology did the job. After all, that’s what they do at a teaching hospital, and the head of the EP lab at Johns Hopkins is on record as saying that for ablation procedures at Hopkins, “the attending shows up to be there during the burn.”

What did you expect?