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Sunday, May 1, 2016

Lawson waits for transplant

Tuesday, April 27, 2004

John Berry Lawson thinks about what his future might hold if he doesn't get a pancreas transplant.

By the time John Lawson was five he was giving himself insulin injections. The 40-year-old father of two was born with Type I juvenile onset diabetes mellitus. Even taking four shots of insulin a day and adhering to a proper diet, the brittle diabetic could not regulate his blood sugar.

Over the years, the disorder took a huge toll on John's overall health. The son of Richard and Linda Lawson of Brazil and Lee Armour of Terre Haute, John developed circulatory difficulties and heart symptoms. He's had 12 laser surgeries on his eyes. And the chronic urinary tract and kidney infections began inflicting permanent damage to his kidneys. Doctors told John if his diabetes could not be controlled or arrested, it was just a matter of time until the kidney damage would become life threatening.

Diabetes mellitus is a disorder of carbohydrate metabolism and is characterized by an excessive amount of sugar in the blood. It results from inadequate production or utilization of insulin. Pancreatic cell clusters, known as the islets of Langerhans, secret the insulin.

John's condition continued to worsen and in December of 2002, Dr. Reza Rofougaran, his diabetic doctor in Terre Haute, told John that he needed a pancreas transplant.

"He said if I didn't get the transplant, I was done for, plain and simple," John said. "He told me I was even building up a tolerance to the insulin." It appeared John tried to sound matter-of-factly when he spoke but his voice was edged with fear just recalling the conversation.

"The process was started and I was notified March 4, 2003, by my transplant coordinator at Indiana University Medical Center that my insurance would pay for most of the surgery, about 75 to 80 percent," John said. "My insurance is Regence Blue Cross Blue Shield out of Portland, Ore. I get it through work at CSX Transportation."

Insurance coverage was crucial because the surgery and follow-up treatment could easily exceed a quarter of a million dollars.

Multiple testing and enormous amounts of paperwork were needed. John was told that when the process was completed, he would be placed on the transplant list with an average waiting time of two years. He thought everything in the preparatory stage was moving along smoothly even as he continued battling physiological medical problems.

On Aug. 27, 2003, John lapsed into a diabetic coma with a blood sugar of 1351. According to the American Diabetes Association, normal range is 80/110 mg/dl. John nearly died and sustained heart damage as a result of an extremely low potassium level caused by the medical crisis. Doctors said he could not survive a similar attack. John's condition was deteriorating more quickly than anticipated. His doctor said he needed to be moved to the top of the transplant list.

John's life was an emotional roller coaster because of the diabetes. His wife, Deana, took the ride with him.

"Life is stressful when you live with a bad diabetic," Deana said. "You never know what's going to happen. I never knew when I'd pick up the phone and hear, 'This is the hospital. Your husband's here'

"It was hard on the kids, too," Deana continued. John Jr. is 18 and LeeAnn is 10. They had to be taught diabetic symptoms when they were little so they'd know if their dad ever needed help and what to do. That's a lot for a kid. I was kind of relieved when it was decided he'd have the surgery. I thought, he might not have the disease anymore. But I was scared."

John, too, was frightened about the surgery because there were no guarantees it would be successful or that he would even survive the procedure. But he was also very excited. If it worked, the surgery could be like a "cure" for the disease.

The new pancreas would produce the life-sustaining insulin and John would never have to take an insulin shot again. He could eat regular food.

His death sentence would be pardoned. Maybe he could expect to have a future, see his children grow to adulthood and perhaps even enjoy grandchildren.

Suddenly, John's dream was shattered. He received a letter from Regence Life and Health Insurance Company, denying coverage for the surgery.

Tomorrow: John has a new battle to fight for his life, the insurance company.

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