John Lawson needs a new pancreas. A brittle diabetic since birth, he developed life threatening kidney damage from chronic urinary tract and kidney infections.
Doctors told John that he would probably die within a couple years without a pancreas transplant. He could not afford the surgery if he had to pay the full amount himself which was estimated at nearly a quarter of a million dollars. He waited anxiously to hear if his insurance, Regence Blue Cross Blue Shield, obtained through his work at CSX Transportation, would pay for the surgery.
John was relieved when his case worker at Indiana University Medical Center notified him in March, 2003, that his insurance company would cover 75 to 80 percent of the surgery.
He began the preparatory phase of medical testing and paperwork in hopes of having the surgery soon, even though it was common to have up to a two-year wait for a donor organ.
"I thought things were going along OK then the bottom fell out," John said. "My caseworker told me the insurance company notified them that they'd denied coverage. I called my mom, bawling my eyes out."
John appealed the decision. Three times he appealed and each time he was denied. The insurance company said John wasn't taking proper care of himself and there was no indication that his condition was life-threatening.
"If I hadn't taken care of myself, I'd be dead now," John said, trying to soften his anger and frustration. "Without this surgery, I'm probably going to be dead in a year or two."
After his second denial, a friend at work told John that his son was an attorney in Indianapolis who handled a lot of insurance company cases. He suggested John call him.
The attorney thought John had a good case. Before he could proceed, John received his third denial. Again he appealed.
He worried about his children. They'd been kept aware of the process and were scared for their dad. John tried to keep a positive attitude but he was honest with his kids. He felt they had to know so they'd be prepared to handle whatever might happen.
While he waited for a response to the appeal, John started getting his affairs in order.
The emotional stress did not help John control his blood sugar, which fluctuated drastically. He was tired most of the time and never felt good. One day John felt unusually tired and achy. He thought he might be getting the flu. He ended up in the hospital in a diabetic coma with a blood sugar of 1351. He almost died.
Feb., 24, 2004, John got confused at work and couldn't focus on his job as a train conductor. CSX laid him off due to his medical problems.
"I was told I couldn't go back to work until I had the surgery or there was a serious change in my disease," John said.
With John's permission, Regence Blue Cross Blue Shield was contacted by a Brazil Times reporter. Dr. Don Thieman, a medical director for Regence, said he could not discuss any specific case or patient. But he offered incite into the process in general.
Dr. Thieman said that after the first decision was made, a patient could appeal if he was denied. There are three grievance levels, each subject to denial. The fourth and final appeal would be decided by an outside reviewer, not a part of the company.
John's emotions spanned the scale. His depression had to be treated with medication. Without a job, he had lots of time to think and worry. He tried hard to stay positive.
He chose to believe that everything would work out. He had to believe that he'd have the surgery, experience good health, go back to work and have a future.
On Jan. 23, 2004, John got a call from the insurance company saying they were giving him his fourth and final denial.
"I was crushed and cried most of the afternoon," John said. "I felt that I'd been given a death sentence from Blue Cross. I called my parents. Mom went into her protecting her baby mode and called the company and gave them a piece of her mind. I called my friends. I didn't know what to do, what was going to happen to me. I was so tired. Tired of fighting those people."
John got through the next month somehow. He worked diligently to get his affairs in order and made a will.
Then, out of the clear, on March 4, 2004, John got a call from his transplant coordinator. She told him Regence had called saying they would pay for the surgery. After a year of going through the emotional turmoil of desperately wanting to live but expecting a slow, painful, untimely death, John, again, had hope. He had a chance.
He didn't know what changed the minds of the insurance company. He had never officially retained the service of the attorney. He had no explanation for the turn around except maybe prayer.
"I was Shappy!" John said when asked how he felt after the call from his coordinator. "That's what I call it when I'm totally shocked by something but really happy about it.
"I want to thank the folks who've donated money to help me," John said. "I'm grateful from the bottom of my heart. And I'm very thankful for the people who prayed for me. I hope they'll keep praying."
John has completed all the necessary paperwork. He's finished the battery of preliminary tests. The Med Center sent him a pager Thursday. They told him he's at the top of the list and he will be called when the next donor pancreas becomes available.
When the call comes, John will go to the hospital to be tested for compatibility. If it's not a match he'll go back home and the organ will be made available to the next person on the list. If it's a match, John will be admitted to the hospital and prepared for surgery to receive a new pancreas.
He's at home now. Waiting.