For California Woman, Lupus Is Life
FRIDAY, Dec. 24 -- Wendy Rodgers began having terrible joint pain during the winter of 1999.
"I would wake up very stiff and achy," said Rodgers, now 37 and living in Los Angeles. "It took me a while to get going in the morning."
Then, after feeling this way for several weeks, she experienced a fright. "I woke up one morning and it was like I was paralyzed," she recalled. "I couldn't even move my head off the pillow. I was so scared."
Rodgers' doctor determined that her blood pressure was high, and she began treatments for hypertension. But nothing seemed effective in lowering her blood pressure, and she began experiencing other symptoms as well -- including fatigue, hair loss and swelling.
"I got so frustrated not knowing what was wrong with me that I started researching my own symptoms," Rodgers said. In a woman's health book, she came across an article on lupus. The description of the joint pain that accompanies lupus caught her attention.
"It just resonated with me," she said. "I remembered that was the very first symptom."
She went to her family doctor and asked to be tested for lupus. He referred her to a rheumatologist, who ran a full panel of tests. The result: a lupus diagnosis.
Within about six months, she was in an intensive care unit fighting for her life.
A severe lupus flare caused a "multitude of horrendous symptoms," Rodgers said. It started with a butterfly-rash breakout across her face after a sunny weekend in Palm Springs. Then her kidneys and nervous system became affected. Her kidneys went into failure, and she suffered several grand mal seizures. She also developed two blood disorders. And, she ended up going on dialysis.
Rodgers spent six months in the hospital. She had to have chemotherapy to force her immune system to stop attacking her body. "When I left the hospital, I was on 24 different medications," she said.
It took about three years to recover from the lupus flare. For a year and a half, Rodgers had regular dialysis and plasmapheresis treatments to deal with her kidney failure and blood disorders.
"It was a very long recovery," she said. "I had to learn how to walk again."
Then, after years waiting for a donor, she had a kidney transplant in May 2009, and her health, she says, has improved tremendously.
"I'm doing very, very well. I feel much better," she said. "If you saw me, you wouldn't know I went through all that."
But she still has to battle lupus. Rodgers says she now takes just three immunosuppressive drugs and two blood pressure medications, but she often feels fatigue and other symptoms. And she has to be very careful not to expose herself to germs because the medications leave her open to infection.
"There are some days you can't get out of bed," Rodgers said. "You have to learn to pace yourself. You have to learn to rest. You have to learn to prioritize what is important."
Yet she feels fortunate to have survived the terrible lupus flare.
"I feel blessed just being here," she said. "I remember thinking, 'Wow, I wonder if I'll be around here 10 years from now.' And, here I am."
A companion article on lupus discusses treatment options.
Posted: December 2010