ST. LOUIS (KMOV.com) -- As an investigative reporter in St. Louis, Carolyn Tuft Wilson fought for the underdog for a quarter century.
Now, as a patient, she finds herself losing her own fight for a surgery her doctors say could save her life.
“I’m not getting any oxygen and it’s killing me little by little,” she said. “It’s like having the flu and you want to feel better, but you don’t you just keep feeling worse.”
According to her doctors, Wilson suffers from a severe airway obstruction caused by her jawbones. Her jaw structure is blocking airflow, restricting her intake of oxygen.
Despite nine surgeries, her condition continues to deteriorate creating dangerously low levels of oxygen and dangerously high levels of carbon dioxide in her system while she sleeps. As a result, her primary physician fears she could go die in her sleep.
“I’ll have these little attacks where I’ll go down where I can’t swallow and I can’t breathe. And I ask my sister to just run me over with a car because it hurts that bad.”
Two doctors- Wilson’s physician and a surgeon who would perform the operation- both believe her only option is an advanced jaw surgery.
They say the procedure would open up her airway and correct her problem. But the pleas of wilson’s doctors were rejected by HealthLink, the administrator of her insurance plan. HealthLink claimed it wasn’t medically necessary.
The decision infuriated Wilson’s sister Cindy Schannot.
“She’s entitled to this surgery and they won’t do it,” she said. “I go to bed every night and I pray she’s going to make it through the night.”
Wilson appealed HealthLink’s denial. A doctor HealthLink described as an “independent reviewer” also determined the surgery wasn’t medically necessary.
After the appeal was denied, the company said their decision was final. Now, the case is being reviewed again by another HealthLink contractor. The federal government offers a process of appeal outside the organization, and Wilson and her lawyer Ken Vuylsteke are hoping the decision can be overturned.
“If it wasn’t involving a woman’s life it would almost be laughable,” said Vuylsteke.
Vuylsteke is representing Wilson for free. He believes HealthLink is purposely delaying the case so that the cost of her surgery will be paid by Medicare.
“By the time they come back with the decision and surgery can be scheduled for Carolyn, it will be October 1st, 2012,” he said. “HealthLink will have made their profit and they can shift the cost of the surgery over to Medicare.”
HealthLink insists that’s not true, and that it has followed the law and made appropriate decisions in Wilson’s case.
But Wilson’s doctors and her loved ones believe that the longer she is forced to wait, the weaker she becomes. They feel like every day that goes by without treatment, the more likely Carolyn will fall asleep and never wake up.
“I call her every morning or she calls me,” said Schannot. “To make sure she’s okay.”