When he was 19 years old, Ken Bernstein’s doctor told him that he wouldn’t live past the age of 40 because his diabetes was so brittle.
Faced with such a grim prognosis, he lived each day as if it was his last, yet he was determined to somehow, someday, beat the given odds.
Today, Ken has not only outlived his doctor’s bleak prediction, he recently celebrated his 60th birthday – insulin free.
After battling diabetes for 47 years, Ken, who has always regarded himself as somewhat of a pioneer, participated in the DRI’s clinical islet trial and was transplanted this past spring.
“This was the best birthday present that I could have ever asked for,” he said elatedly. “I never thought I’d live this long, and now I’m insulin independent. It’s a new freedom that I can’t remember ever having.”
A Race Against Time
What he does remember, however, is a lifetime spent in a race against time. Since his diagnosis in early adolescence, Ken refused to let diabetes stand in his way. He lived an active life and tried to do things like everyone else – only better, because of the disease. As a result, he quickly mastered a number of sports, like golf, racquetball and baseball.
Over the years, Ken has tried to maintain his health as best as possible to extend the looming deadline. Though he had developed retinopathy at an early age, it had never proliferated and he was spared from blindness, giving him a renewed incentive to take better care of himself.
Despite his diligence, he was soon plagued by hypoglycemic unawareness, which landed him in the emergency room on countless occasions.
When he eventually reached 40, Ken was in relatively good health and thankful that he had made it that far. But the reality of diabetes soon dealt him a strong blow.
The Death of a Friend
A close friend of the same age could not escape the wrath of the disease, and Ken painfully watched diabetes take his life after losing the sight in both eyes, suffering with amputated limbs, and enduring a demanding schedule of dialysis.
“I thought it wouldn’t be long before I was in the same hospital bed facing a similar fate,” he recalled.
He had always been active in diabetes-related causes, whether it was aiding kids who struggled with the disease or assisting with fund-raising efforts.
In 1996, he helped assemble a group of people in the Los Angeles area to hear a team of scientists from the Diabetes Research Institute discuss the potential of islet cell transplantation as a cure for the disease. At the time, he was vaguely familiar with the procedure, but refused to put his hope into something that seemed to be a “remote therapy.”
Clinical Trials at the DRI
Nevertheless, he kept abreast of the progress over the years, and learned that the DRI was beginning its clinical islet cell transplantation trials. In March of 2000, he submitted the initial paperwork and in a few months, was selected as a candidate.
“My pager went off exactly one year to the day I was accepted into the trial. They called me and told me they had a match,” Ken remembers. “I called my wife first, and she was already making the flight reservations. It was a very emotional experience for us. We took the red-eye to Miami that night. It was exciting and frightening at the same time, I couldn’t even sleep.”
Though he was dealing with so many emotions, he clearly remembers the entire procedure.
“Dr. Ricordi was holding my hand and I was crying as I saw the new cells floating down the tube. I remember thinking, ‘My God, there are these stranger’s islets coming down into me, and they’ll be starting to produce insulin,’” he said.
“Part of the reason why I was so emotional is that someone died to give these to me, but I’m so happy to have a second chance.”
Later that month, Ken was called for his second transplant. Though he managed to grab some sleep on the plane, he was anxious about the prospect of becoming insulin independent.
Over the past few months, Ken has gotten back to doing the things he loves. To celebrate his recent milestone, he embarked on a three-day fishing trip 175 miles off the shore of San Diego. Between him and three friends, they reeled in almost a ton of tuna.
“For the first time, I didn’t have to worry about insulin or about passing out after fighting a tuna for five hours,” said Ken. “I struggled my whole life with diabetes, and this is an amazing feeling.”
Editor's note: Throughout the course of clinical trials, the results and/or status of study participants may vary.