When Justin Sciancalepore talks to his patients now about how treatments for stroke feel, he doesn’t pretend they will be less painful or less exhausting than they really are.
More than most doctors, Sciancalepore knows the truth. At just 35, he had a stroke at work a year ago and wound up a patient in the intensive care unit where he often treats people who’ve had strokes. If things had gone only a little differently, he could have died or become severely disabled. Instead, even though he did not follow the advice doctors typically give people with stroke symptoms, he survived a clot in his frontal lobe with no serious deficits.
The experience has, he said, made him a more empathetic and honest doctor. It has made him a proponent of disability insurance, living wills and conversations with loved ones about worst-case scenarios even when you’re young. It has made him a man who offers one essential piece of advice: “Don’t ignore your wife.”
It was his wife Melissa who noticed something was wrong on the afternoon of Wednesday, Oct. 25, 2017—five days after his 35th birthday. The couple—they’ve been together since high school and married seven years—were at their new home. Their children were 3 months and 3 years old at the time. They were discussing what color to paint the kitchen.
Melissa, a third grade teacher, told her husband he’d been slurring words and seemed out of it. She thought the left side of his face had drooped, a classic stroke symptom. She wanted to call 911. “Don’t call,” he told her. The fact that his response wasn’t his usual “dissertation” was another clue, she thought.
Sciancalepore, who is now in the second of three years in a pulmonary and critical care medicine fellowship at Jefferson Washington Township Hospital, looked in the mirror and saw nothing amiss. His wife called 911 anyway. The paramedics didn’t see any symptoms, either, although his blood pressure was high. They and Melissa urged him to go to the hospital. Sciancalepore (pronounced SHANK uh luh PORE ee) decided not to go to the emergency department. He figured he’d just be stuck overnight in observation. There would be lots of tests, and it wouldn’t look good for the new fellow to be hospitalized.
Melissa protested, but let him win. “How can I argue with a doctor?” she said.
It seemed like her husband had been right when nothing unusual happened that night or the next day. On Friday, Oct. 27, though, he went to an ultrasound conference at Jefferson Stratford Hospital. One of the attending physicians there thought he was slurring words and answering questions unusually slowly. The group took a look at him, but, again, he seemed OK.
Sciancalepore was worried this time, but he drove to Washington Township and began his work day. He did a procedure without any problems, but when he tried later to type on the computer, his left hand wasn’t working well. Before he could figure out what to do, there was a “rapid response” alert on the overhead—a call for the critical care team to rush to a patient’s room. When he got there, Joan Wiley, an attending physician and mentor, saw that Sciancalepore was having trouble getting his arms into the protective gown.
“I immediately knew something was wrong,” she said, but the patient came first. After the patient was stabilized, Wiley insisted that Sciancalepore go to the emergency room with another fellow. He resisted, saying he had work to do, but he went.
That’s when the stroke symptoms really kicked in. He started having trouble controlling his left leg and had to prop himself up on the wall to stay upright. He knew this was bad and became “profoundly scared.”
Once in the ER, Sciancalepore took some comfort in his continuing ability to think abstractly. He asked a nurse for water to test whether he could swallow properly. He could, another good sign. As the round of tests started, he could think of only one reason why a man his age with no risk factors would have a stroke.
He asked a co-worker to test his blood for diseases that cause abnormal clotting. Imaging scans soon showed a clot in his right, middle cerebral artery. Doctors concluded that it had been too long since the symptoms started to try to remove the clot. That might cause more harm than good. The trick would be to keep his blood pressure high enough for blood to continue flowing to tissue near the clot so it wouldn’t die. Five days into his 11-day stay in the ICU, tests for clotting diseases came back.
Sciancalepore had antiphospholipid antibody syndrome, a rare autoimmune disorder that damages tissues or cells. It most often occurs in young women, Sciancalepore said, and is often discovered after they have multiple miscarriages. Clots are another result and Sciancalepore would have to take the blood thinner Coumadin the rest of his life.
He went from the hospital to Kessler Institute for Rehabilitation in Marlton, where he spent a week as an inpatient and then did intensive outpatient therapy. The staff at Kessler was so impressed with his attitude that they’re including him in their 2019 calendar, which features inspiring patients.
“What do you want to do when you leave here?” a staffer asked him. “I want to be able to hold my son and not feel like I’m going to drop him,” Sciancalepore replied. Part of his treatment was to carry a 16-pound weight with a diaper on it.
He also was eager to return to work, which he did on March 1—two months before the kitchen was finally painted blue. He’s had cognitive testing that found no significant problems. He still finds it a little challenging to type with his left hand when he’s tired. (He’s right handed.) His doctors think his work, which is both mentally challenging and physically active, is the best therapy. “He’s very, very lucky,” Wiley said. She said the stroke has made an empathetic man even more empathetic.
Now that he’s experienced what it’s like to have a central venous line placed, his description of how the lidocaine used to numb pain feels has changed. “It is not a pinch and a burn,” he said. “It feels like somebody is stinging you with a razor blade over and over again.”
He’s more likely now to tell people explicitly how well or badly they are likely to do after a stroke. He thinks they should hear the truth, and many have thanked them for it. He doesn’t always tell them he’s had a stroke himself, partly out of fear they’ll think less of him as a doctor and partly because he doesn’t want them to assume they can do as well as he has.
Sciancalepore said he struggled with giving up control and accepting the role of patient. He remembers how much concentration it took for him to do even simple things with his left hand after the stroke. He’s tried to help medical students understand how frustrating their commands can be for patients. He tells patients it’s OK if they can only manage a twitch. He doesn’t sugar coat how hard rehab will be.
He talks with his fellow doctors about how important it is to let patients have as much control as possible. When he first went to Kessler, a therapist brought him a towel, helped him to the shower and left him to take a shower by himself. “To me, that was the most liberating feeling,” he said. “All I could think was, ‘Don’t fall, don’t fall, don’t fall. If you fall they’re going to take this away from you.’ “
Taking a cue from his earlier interaction there, he now pays more attention to his patients’ goals. “What do you want to do when you leave here?” he asks them.
After stroke strikes, what comes next?