Showdown with Diabetes
By Deb Butterfield
W.W. Norton & Company
Deb has ‘a history of diabetes.’
When people ask Deb Butterfield if she has diabetes, she doesn't know what to say. If the question is on a form, she usually adds another box labeled "history of diabetes."
Butterfield used to be insulin-dependent. Since getting a kidney and pancreas transplant in August 1994, she has had to take small daily doses of maintenance immunosuppression medications to prevent her transplanted organs from failing. But only that and vestiges of neuropathy in her legs mark her as someone who had diabetes.
Butterfield's Showdown with Diabetes is a moving and well-written account, one part memoir and one part introduction to the new world of pancreas and islet cell transplants and advances in immunosuppression.
Butterfield starts by telling the story of her life with diabetes, follows through her progressive debilitation—including diabetic kidney disease—until she was finally freed of restrictions and needles with her kidney-pancreas transplant. She notes without rancor that none of the many doctors who had treated her over the years ever told her of the transplant alternatives. It was only because her mother happened to read a magazine article that mentioned pancreas transplants that she ever heard of them.
The book's second part has the wider perspective of letting people with diabetes know about transplant alternatives. Few people with diabetes are ever told of these options, she writes. "Even today only 5 percent of those who could benefit actually go forward with the operation."
Yet pancreas transplants are no longer experimental. Since 1966 when the first pancreas transplant operation was performed at the University of Minnesota, more than 11,000 people with diabetes have received a transplanted pancreas. Success—defined as being insulin independent one year later—ranges from 70 to 90 percent.
What is a cure?
Are people with pancreas transplants cured of diabetes? In depends on how you define "cure." Butterfield's life now is effectively unobstructed by diabetes. "I don't have the diets, I don't have the insulin injections or the glucose monitoring requirements. I have normal blood sugars," she told me in a phone conversation. And she writes, "My sense is that the term cure is subjective, so I refer to my pancreas transplant as my cure, because it isn't a cure for everyone."
Her doctor, David E.R. Sutherland, disagrees that a pancreas transplant can be called a cure for diabetes. "You are cured of insulin dependence, but not diabetes per se," he tells her. " The latter is just treated." Still, as a treatment of diabetes, a pancreas transplant is superior in terms of diabetic control and ease of management, he says.
While a pancreas transplant was wonderful for Butterfield, one problem is that there simply aren't enough pancreases for everyone who potentially needs them. There are about 5,000 pancreases currently available each year through the organ allocation system. In addition, pancreas transplants cost from $60,000 to $90,000.
Beyond pancreas transplants, Butterfield offers a thorough and up-to-date guide to the latest research. This includes the rapidly advancing field of islet transplantation and current tests of a new form of immunosuppression that is not required on an ongoing basis.
To date the focus of diabetes research has been on management of the disease, as Butterfield forcefully points out. Based in part on her own experience, she rejects the establishment position that only careful management can lead to healthy living with diabetes.
This article appeared originally on the DiabetesWebSite.com, which is no longer on-line.
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