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Fred Kepler, a 50-year-old Portland, Ore., video writer/producer, says that though he had no family history of diabetes, he developed the disease when he was 8."I went to work delivering cookies with my grandfather one day," Kepler says. "We kept having to stop so I could pee, and I was always thirsty."
One blood test later and Kepler was hospitalized with juvenile onset (type 1) diabetes and taught "the 1966 version" of diabetes management: how to check urine for glucose, what carbohydrates were, and how to calculate insulin. "We didn't have blood glucose monitors. Home urine testing was terribly inaccurate; just a vague estimate of blood sugar within the last couple hours. Nowadays, I'd call it SWAG testing [Scientific Wild-Ass Guess]. That's a real term. Then we'd guess how much insulin I needed."
Until he was old enough to do it himself, Kepler's parents gave him his insulin injections. "The first time I shot myself up was the day before diabetic summer camp, when I was ten. Imagine the fun. All those little kids carrying urine from the latrine to the camp lab." His family moved shortly after that summer, and found a new doctor. "First blood test and I was back in the hospital with out-of-control blood sugars. Apparently our SWAG testing wasn't very accurate."
Kepler's diabetes went off the radar when his family was hit with another health crisis. "I was ten when my mom got cancer. She was a whole lot sicker than me. My diabetes was the last thing anyone was thinking about." Kepler remembers lots of blood-sugar highs and lows but didn't get any new advice on how to manage them. His mother died when he was 16, leaving Kepler and his sister with a grieving father--one who was unable to focus on his son's medical needs. "I spent high school and college just like any kid in the Seventies. My diabetes management? Candy and beer. I was in total denial about my disease."
"I got my first glucose meter in my early twenties but wasn't very dedicated to it," Kepler says. With no medical insurance other than Medi-Cal (California's state-sponsored insurance), and with irregular paychecks as a freelance writer and video producer, he couldn't afford regular visits to endocrinologists. "I'd been looking after myself since I was a teenager. I figured if I didn't focus too much on the disease, it wouldn't become a problem. At some point a doctor started me on two shots a day, and helped get my sugars under a little better control, but I was essentially on my own. I was twenty-six when I realized I was much sicker than I wanted to be."
Kepler developed retinal hemorrhages and cataracts. "The blood vessels in my eyes ruptured, and I'd lose part of my vision for a few days [at a time]. Eventually it would clear up. I'd just work around it." Shortly after a business trip to Taiwan, where he was discouraged from drinking the water (and became dehydrated), he experienced severe hemorrhages. "I could barely see, but I drove myself to the doctor. It was some crazy combination of irresponsibility and stubborn self-reliance. Frankly, it didn't occur to me to ask for help." His vision improved with retinal laser surgery, but years of unmanaged diabetes took its toll on the rest of his body.
Kepler's kidneys failed at 31 and he began dialysis. "I'd been sick for so long [and had] such lousy medical insurance, it was a relief. I could breathe because dialysis took fluid off my lungs--and made me automatically eligible for Medicare. Finally, I could get decent health care." In 1990, Kepler got his first kidney transplant, donated by his father.&nbsp;
The new kidney, and associated medical care, motivated Kepler to test his blood sugar levels and give himself insulin injections several times a day. "I went from barely checking my sugars to testing all day long. I took three to six insulin shots a day. That's what it took to keep the kidney." He improved his diet and took up kung fu. "There's nothing like a transplant and maturity to make you take life seriously."
After 13 years with the new kidney, Kepler became ill once again. Dr. Julie Tank of Legacy Good Samaritan Hospital in Portland, Ore., who is, according to Kepler, "the best nephrologist [kidney specialist] I've ever had," started Kepler back on dialysis at the American Red Cross Center. This time, he was in better shape. "I rode my bike to dialysis three times per week."
Friends and family went through the tissue-matching process at Legacy Good Samaritan's Transplant Center to find Kepler another kidney, but none provided a perfect match. Bill Bennet, MD, Medical Director of Legacy Transplant Services, placed Kepler on the donor list. In December 2004, he got a kidney. "It was the best Christmas present I ever got," says Kepler, "but the worst Christmas for the family of another man."
Three years ago, doctors outfitted Kepler with an insulin pump. "I resisted it for years because I didn't want to be tethered to a machine, but it's been liberating. It acts like a normal pancreas, delivering a low, steady dose of insulin. I give myself extra as needed. My blood sugar is in tighter control than it's ever been."
Today, Kepler lives with chronic hypertension and the side effects of immune suppression medications, which prevent kidney rejection, eye problems and mild neuropathy in his feet (all common complications of diabetes), but he considers himself healthy. "Healthy has a different meaning to someone who's had chronic disease for 40 years than it does to someone with a perfectly sound platform." And, he says, "I plan on living for decades at this level of health."
About the Author
Jeanne Faulkner is a freelance writer and registered nurse in Portland, Ore. Her work appears regularly in Pregnancy and Fit Pregnancy, and she has contributed articles to the Oregonian, Better Homes & Gardens, Shape and other publications.