A doctor, a patient and the bond they form
Jay Schnitzer, Dr. Jay, a podiatrist, had just had a kidney transplant, but it wasn’t going so well. The kidney wasn’t producing enough urine.
Avrum Gillespie had just started at Temple University Hospital as a nephrologist.
Dr. Jay came in to Dr. Gillespie for a kidney biopsy. A long needle that looks like a meat thermometer goes right into the kidney, grabs a tiny piece.
“How many of these have you done?” Dr. Jay asked.
“This is my first biopsy as an attending,” Dr. Gillespie replied.
“You’ve never done this before?” the patient said.
“I’ve done like 20 as a fellow,” the doctor said.
They laugh about this now, but so began a beautiful friendship between doctor and patient.
This was July 13, 2009, and for more than eight years now, each has had a profound influence on the other’s life.
“He’s like a son to me,” said Dr. Jay in December, after coming to the emergency room and being admitted to the hospital, where Dr. Gillespie had gone to check on him.
“There are so many little things he does,” said Dr. Jay, 69. “He gives his cellphone to everyone, but he’s so reassuring to me and my family. They’re always saying, `Call Avi, call Avi. Call Avi.’”
When Dr. Jay fell in his bathroom at home the other day, and hurt his hip, the first person he called was Dr. Gillespie.
“Avi, I can’t get up.”
Dr. Gillespie helped keep that transplanted kidney working despite endless infections and challenges. For two years, Dr. Jay made weekly visits to Dr. Gillespie to have his urine tested and his antibiotic adjusted.
Dr. Jay has urinary problems from his days as a naval officer in Vietnam that contribute to his kidney issues post-transplant.
“We’ve both grown together as we’ve gotten older,” said Dr. Gillespie, now 39.
“He knows when I’m in trouble,” said Dr. Jay. “He knows when I’m down. He can read me really well.”
“The way I’ve seen medicine is it’s a losing battle,” said Dr. Gillespie, who did his residency and fellowship at Temple. “Took me a while to realize that but you dig a trench, you stand your ground, and eventually you have to retreat. Sometimes you advance a little bit but it’s a war you can’t win. For a while we’ve been able to stand our ground but lately we’ve been on the retreat. I was hoping we’d get back some ground, but…
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Dr. Gillespie can’t figure out why he was assigned Dr. Jay in his first weeks on the job.
Maybe it was just random or maybe “no one wanted to mess up the VIP patient, so they said `Avi, here you go.’” Dr. Jay was a professor in the Temple School of Podiatric Medicine, served on the executive board of the university’s alumni association, and had a thriving private practice in Bucks County.
He volunteered in the medical tent at the annual Susan G. Komen breast cancer walk on Mother’s Day, a tradition carried on now every year by students and staff at the podiatry school. “He’s always been that big-hearted guy, a very good person,” said Howard Palamarchuk, a clinical associate professor at the podiatry school. “He’s touched a lot of lives and launched a lot of careers.”
Dr. Jay was larger than life in many ways. He had been 347 pounds at one point, and had open heart surgery. It was a dye used in that surgery that dealt the devastating blow to his kidneys. He had bariatric surgery, and after two years on dialysis, a kidney transplant.
Dr. Gillespie will always be grateful he got this particular patient, not only for their enduring friendship, but also for Dr. Jay’s influence on his research.
Dr. Gillespie is the son of two sociologists, so perhaps this direction in his career was inevitable. But he’s passionate about social network theory and understanding how and why dialysis patients communicate with one another and make the decision whether or not to seek a kidney transplant.
From the moment Dr, Jay went on dialysis himself, he would talk to other patients, encouraging them not to give up hope, and encouraging them to pursue transplant. He was widely recognized for this, winning many awards, including being named man of the year by the National Kidney Foundation Delaware Valley chapter.
Dr. Gillespie had been reading about social network theory, thinking how the behavior of the dialysis center was the perfect laboratory to study this. Dr. Jay’s interactions with other dialysis patients confirmed the value of what Dr. Gillespie was trying to study.
“I’m trying to quantify and standardize what he does,” said Dr. Gillespie, “because what he does I feel is effective.”
At two dialysis clinics, Dr. Gillespie is studying how social networks work, how patients decide whether to pursue transplant.
In classic social network theory, he said, usually the people with the most connections tend to be most central. They are the thought leaders, the information brokers. “The interesting thing about my research and my study is kind of contradictory,” he said. “We find that people in smaller, peripheral networks are actually very successful in completing transplants workups” — getting all the tests to make them candidates for transplant — “whereas the people who are most central in the network tend not to complete a lot of their workups.”
He notes that people in dialysis rarely hear about good transplant outcomes. People who get transplants don’t come back to dialysis unless something goes wrong.
“There’s something going on here and we need to study this,” said Dr. Gillespie, “and I think not only will this tell us more about human behavior but we will really be able to help people with this research.”
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Dr. Jay’s own story of transplant is dramatic. He was preparing to do ankle surgery on a woman who wasn’t yet under anesthesia when he entered the operating room. She noticed all the padding on his neck. He had a hemodialysis port for his own dialysis that was covered carefully to prevent infection. He brushed off her question. “I have a small kidney problem.”
Six weeks later, she donated a kidney.
Dr. Jay had spent his life helping others, and now someone had helped him.
“Just being nice to patients had literally saved my life,” said Dr. Jay.
He’s had eight good years with that transplanted kidney. But recently, when working, he caught his foot in a door, causing an immense bruise. “He was getting skin grafts, and complication after complication,” said Dr. Gillespie. “Fluid on lungs. Pneumonia. Delirious. Then c-diff,” a bacterial infection of the colon, often acquired in a hospital.
Dr. Jay emailed Dr. Gillespie the other day with the latest update: “Since I don’t know what to say anymore, I will be resorting to Shakespeare. The green slime hath returned with mild vengeance.”
The slime was c-diff.
Dr. Jay was trying to be funny, to make Dr. Gillespie smile. Dr. Gillespie had looked so down at their previous visit because the latest test results were so bad. Patient wanted to cheer his doctor.
“I’m starting to run out of things I can do therapeutically for him,” said Dr. Gillespie.
He has tried to help in other ways, by encouraging Dr. Jay to share his story.
“This exercise in getting his story out is therapeutic, too,” said Dr. Gillespie. “He’s a healer. He feels that if he tells his story he can help somebody who may be reluctant to get a kidney transplant or ask someone to be a living donor. I can see this story is helping him.”
Dr. Jay knows his heart and kidney are failing. He won’t go back on dialysis, and he’s too sick ever to get another kidney transplant. He knows ultimately his condition is terminal.
“I just want to live for as long as I can,” Dr. Jay said. “But I must be honest. I’m scared.”
The two have yet to discuss specifics about Dr Jay’s options at the end of life.
“We have skirted around the conversation,” said Dr. Gillespie. “To some degree I’m in denial. He’s in denial.”
Dr. Jay loves Dr. Gillespie’s keen understanding of how much bad news to deliver at any one time, of how much Dr. Jay can tolerate.
Dr. Jay worries Dr. Gillespie will go off and dedicate himself to his research.
“You know me,” Dr. Jay told him in the hospital. “To me you are gold. And I’m being very greedy when I say that. You can’t go anywhere.”
Dr. Gillespie says he will be there with his first patient to the last.
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Michael Vitez, winner of the 1997 Pulitzer Prize for Explanatory Journalism at The Philadelphia Inquirer, is the director of narrative medicine at the Lewis Katz School of Medicine at Temple University. Michael.firstname.lastname@example.org