Julian L. Seifter

Dr. Julian L. Seifter, 61, a nephrologist at Brigham and Women’s Hospital in Boston and a Harvard Medical School professor, specializes in treating patients who have chronic kidney disease.

We spoke at his Harvard office for three hours about his new book, “After the Diagnosis: Transcending Chronic Illness,” which was written with his wife, Betsy Seifter. It’s about living with diabetes, heart disease, lupus, even AIDS. An edited version of that conversation and subsequent e-mails follows.
Q. You are a doctor who treats people with chronic diseases. But you have one — diabetes. Are you a good patient?
A. Mixed. When I was diagnosed — 30 years ago — my first response was to run away from the illness. I was just at the beginning of my career, I had a young family and I didn’t want to be held back by my metabolic problems. Yes, I took insulin. But staying on a restrictive diet and monitoring my blood sugar levels was harder. I pretended to myself and others that I wasn’t sick.
I’ve had complications associated with three decades of diabetes — an eye hemorrhage, neuropathies. Over time I’ve tried for better control of my blood sugar levels, but I’ve never been perfectly successful. Good control means trying to duplicate what the pancreas does, and I never really wanted to become my pancreas.
Q. Has being a patient helped you be a doctor?
A. I’ve certainly learned things I’ve brought back to the clinic. I have a retinopathy, for instance, which can be a complication of diabetes. I don’t have good vision in my right eye, as a result. When this first happened, I said to my ophthalmologist, “I can’t lose vision. I need to read.” And he said, “Any vision is better than no vision.”
That was important. I started thinking, “Concentrate on things you still can do and develop some new things.” I’ve since started gardening, which doesn’t require the most acute vision. It’s something I probably wouldn’t have done otherwise. I counsel my patients to replace what they’ve lost with something new.
Q. Can you give an example?
A. I had one patient who was a scuba diver and who loved discovery. I had to tell him that with his condition scuba diving isn’t safe for him. So I’ve encouraged him to prospect for Native American relics in the Southwest desert, which he’s also interested in. It’s a way he can still be an explorer, but not risk his kidney.
Q. You write that a chronic disease can provide an opportunity for growth and personal development. That’s hard to imagine.
A. It can shake you out of old habits and routines. It takes away the “taken for granted.” You’re invited, almost forced, to find new directions and pursue unexplored potentials.
I had a patient, Cassandra, an opera singer, who first came to me because it was thought she had a kidney problem. It turned out she had a severe inflammatory condition in the head and neck — in the larynx, her instrument. She could no longer sing professionally. With no science background, she began reading the papers on her treatment and cultivated an interest in the illness. Eventually, she went back to college, took science courses and got accepted to medical school. She’s about to become a nephrologist.
Q. So a chronic disease diagnosis doesn’t have to be seen as The End?
A. It doesn’t have to be. Sometimes it is, though. I had another patient, a policeman, very overweight, with diabetes. He could drink a case of beer at a time. And he totally enjoyed his social life. By the time he was 60, he needed amputation and dialysis. He said, “I don’t want that.” I wasn’t going to talk him out of it. He had hospice care and he died peacefully.
If someone rejects dialysis, I want to make sure they’re not doing that because of depression. If a patient is wavering, I’ll say: “At least try it. You can always come off.” I had a patient who, at first, rejected dialysis, but who agreed to a trial and then found that the treatments made him feel so much better that he then wanted to stay on. It was a three-times-a-week commitment, but he came to see how he could fit it into his life — which he’d still have.
Q. Is it difficult to get patients to agree to a treatment as difficult as dialysis?
A. The alternative is death. I try to meet my patients wherever they are so that they will do it.
I had one who wanted to go to Florida a last time before starting dialysis. I worried about him. His condition was such that he might have heart failure. But I also knew he’d never go onto dialysis without doing this. I said, “O.K., call me when you land in Miami.” He said, “Doctor, you don’t understand, I’m driving down.”
Now, this was really dangerous. So I said, “Call me from each state and I’ll have the address of someone you can check in with in case there’s an emergency.”
The phone calls came in regularly until the last day of his trip. I was worried and I called his home in South Florida, and there was such an incredible noise in the background that I could hardly hear his wife. “What’s going on?” I asked. “That’s the rescue helicopter on the front lawn,” she said. He’d made it there, but then needed to be airlifted to the hospital!
Q. Do you regret enabling this journey?
A. No. From my own experiences, I understood why patients sometimes resist doing what’s best. The idea of sticking yourself with a needle every day for life: that wasn’t easy for me to accept. I hated the thought that every morning I was going to wake up knowing, “I have diabetes.” So I’m not a puritan with my patients. You have to do what is possible.
Q. In your book, you suggest a heretical idea: that chronic disease patients deny their situation, a little. You’d better explain.
A. They should do that, within reason. Everyone needs the opportunity to forget their disease for a while and think of other things. Otherwise, they can become their disease. So: I’m not a diabetic. I’m a doctor who has diabetes.
Of course, they should do everything that modern medicine offers. I always tell them that it is serious, but it’s not the end of all possibilities — you’re alive till you are dead. “It’s not over till it’s over.” Yogi Berra, he could have been a great clinician!