It was the cold she noticed first.
Two years ago, when Cat Davis returned to Spokane, she couldn’t seem to get warm. She thought maybe living in Arizona had left her unaccustomed to Spokane’s October chill. But days went by and she grew more miserable.
She finally went to the doctor. “I was diagnosed with Raynaud’s disease,” she said. The disease causes arteries that supply blood to the skin to narrow, limiting circulation to affected areas.
Davis was told she’d be better off living in a warmer climate, and she wanted to return to Arizona anyway. But once there her health problems continued. “I had finger ulcers,” she said. “They were so painful. I was working as a receptionist, and I was down to using a just a few fingers.”
Her doctor scheduled surgery to remove the ulcers. “When they went to take blood, they had such difficulty – they tried my feet, arms, hands, and couldn’t get any.”
And suddenly at age 22, Davis felt like a sick person. “Everything started to unravel,” she said.
She was diagnosed with CREST syndrome, a combination of five diseases – calcinosis, Raynaud’s, esophageal dysmotility, sclerodactyly and telangiectasia. The symptoms of CREST are associated with a generalized form of scleroderma – in Davis’ case rapidly diffuse systemic scleroderma.
“He (the doctor) told me I had two to five years to live,” she recalled. “Then he said, ‘You’re lucky because you’ll never have wrinkles.’ ”
Davis didn’t feel lucky at all.
Scleroderma literally means “hard skin.” The disease causes the immune system to attack and destroy healthy body tissue.
Back in Spokane her mom, Sally Davis, began researching treatment options for the incurable disease. She read that some patients responded positively to minocycline, an antibiotic.
Davis began a course of treatment. “It made me deathly ill,” she said. “I was still trying to work, but I was fainting and vomiting.”
Even worse, she saw no improvement in her scleroderma.
Next she traveled with her mom to Iowa to try a weeklong IV treatment of a different antibiotic. While there she met a young man who also had scleroderma. Davis said, “He was in a wheelchair – basically paralyzed from the neck down. He talked straight to me.”
He convinced her to apply for disability and focus on fighting the disease. She listened. “It was the best decision I’ve ever made,” she said. “For the first time I really got it. I am sick – really sick.”
And despite the antibiotic treatment, her condition worsened. Then a friend told her about regenerative cellular therapy. She and her mother researched the treatment, offered in Mexico, and decided to pursue it.
Sally Davis flew from Spokane to Arizona and together they drove to Rocky Point, Mexico.
None of the treatments she’s pursued is covered by insurance. The bills began mounting – $40,000 and counting.
While in Mexico she saw improvement after the first course of treatment, so they stayed to begin another course. Then she said, “It all went to hell.”
Davis got progressively sicker. “By the 10th treatment I was in horrific pain. I knew I was dying. I felt like one more treatment would kill me.”
She told her mom they needed to return to the U.S. immediately. They packed their bags, drove to Arizona, and three days later Davis was admitted to the hospital. “I had three raging blood infections,” she said. “They still don’t know how I survived.”
When she recovered from the blood infections a horrible irony became clear. “After I was finally able to not be dying, I noticed my arms were soft and normal.” The experimental treatments had resulted in an improvement in her condition.
Sadly, the improvement didn’t last. “It’s all come back – much worse. My arms are hard and shiny.”
In addition, her hands are curled. She can’t open them or make a fist. The hardening of the skin on her stomach makes it difficult for her to stretch her arms over her head. Sleep isn’t easy due to esophageal symptoms that cause her to vomit when she reclines. “I’m very independent and I don’t like help,” she said. “But there are days when I’m bedridden from pain.”
She’s continuing antibiotic therapy. Her only other option is a stem cell transplant, but her doctors don’t think she’d survive the procedure.
Another result of the disease is the sense of isolation Davis, now 24, feels from her peers. “Everyone my age is getting married or focused on their careers.”
Davis is preparing to move back to Spokane permanently. “I’m dying,” she said. “It’s time to come home.”
Her parents and four older brothers are eager to have her return. And she’ll be an aunt again soon – two more babies are expected.
“I’m not afraid to die,” she said. “I’m afraid to not live.”