Don had been a diabetic for over a decade and took his insulin pretty much as the doctor ordered. Every morning, after checking his blood sugar levels, he would adjust his insulin dose according to the written instructions. From the beginning, Don’s doctor worried about the effect of the diabetes—he ordered tests, adjusted dosages and prescriptions, and sent his patient to the ophthalmologist for assessment and laser treatment to prevent blindness.
It was the amputation of his right foot that really got Don’s attention. Don was not exactly athletic, but he did play a round of golf once in a while. He first noticed a little scratch on his foot after a day on the golf course. It was not until a week later that he noticed the swelling and the redness in his foot and an ulceration that was forming. He was surprised that his foot did not hurt, but the doctor informed him that diabetic foot ulcers often do not cause pain. That is part of the problem with diabetes—you lose your sensation in your feet.
After six months of receiving treatment on a weekly basis, a decision had to be made. “There is not any choice,” his doctor said. “The foot infection is spreading, and if we do not amputate the foot, we may have to amputate to the knee or even higher.” So after describing the potential benefits and harms of the surgery and asking whether there were any questions, the doctor asked Don to sign a form. The next morning, Don’s leg was amputated above the ankle, leaving him with a stump in place of a foot.
The surgeon came to Don’s room the day after surgery to take a look at his amputation. “Beautiful work,” he said with a big smile on his face. Maybe it is a beautiful stump, Don thought to himself, but it does not work like my old foot. At first, he felt sorry for himself, thinking of what lay ahead to literally get back on his feet.
The physical therapist who visited Don in the hospital told him, “You got off lucky—now, are you going to take control or let diabetes control you?” But diabetes is already controlling me, Don thought to himself—daily insulin; blood sugar testing; weekly trips to the doctor; and now, despite it all, an amputated foot.
“Diabetes is a bad disease,” his doctor told him. “We are doing everything we can do, and you are still experiencing complications.”
Maybe the doctors were doing everything they could, but Don wondered what else was possible. He enrolled in a self-help group for diabetics. They shared stories of medical care, new advances in diabetes management, and their own frustrations with the disease and with their medical care. Don realized he had received good medical care, but he also acknowledged that good care by good doctors is not enough. There needs to be a system that makes the pieces work together, but there also needs to be a patient who takes charge of his care.
So take charge, he did. He worked closely with the practice’s physician assistant and nurse practitioner, who were experts in diabetic management. He learned how to interpret his blood tests and how they were useful for day-to-day monitoring of his disease. He also learned about hemoglobin A1c blood tests, which measure how well diabetes is doing over periods of months. After several months, his clinicians taught him how to adjust his dose of insulin to accommodate for changes in his routine or during minor illnesses. They always let him know that care was available and that he did not need to make decisions all by himself. Don also learned to examine his feet and how to prevent minor injuries from turning into major problems. His sporadic eye doctor appointments turned into regular question-and-answer sessions to compare the most recent photographs of his retina to those from the past.
Don found himself keeping his own records to be sure that he had them all in one place, fearing that one doctor would not talk to another and that the records in one office or one hospital would never make their way to the next. Don’s fears were well founded: when his kidney function began to deteriorate and his primary care doctor sent him to a kidney specialist, who sent him to a transplant surgeon, and then to a vascular surgeon to prepare him for dialysis, sure enough, the only records the dialysis doctors could rely upon were the ones that Don had kept on his own.
Soon the dialysis doctor told Don that he had a tough decision to make. Did he want to come into the dialysis center for half a day twice a week, where they take care of everything, or did he want to learn home dialysis and take care of this treatment on his own? Don had lots of questions. He needed to understand what each dialysis scenario entailed and the advantages and disadvantages of both options, including the costs and discomforts. He also wanted to know about any other potential treatments. Don asked questions of his doctors, learned as much as he could about dialysis on the Internet, and outlined the pros and cons of home dialysis. After that, it was an easy decision for Don. “Sure, I will learn how to do it myself. I want to be in charge of my own care. I want to stand on my own two feet,” he told the doctor without a moment’s hesitation.