Nancy Kilbourn’s Story: Finding Answers and Living with Vasculitis
At 73 years old, Nancy was so exhausted that walking across a room felt overwhelming. She had begun using a cane, was driving less, and slowly withdrawing from activities she once loved. For years she had been searching for answers. Doctor visits and tests kept coming back normal. Then one doctor ordered a CT scan and urgently referred her to a rheumatologist. Within days, Nancy finally had a diagnosis: microscopic polyangiitis (MPA).
Surprisingly, she didn’t feel frightened. “Rather than feeling scared, I felt relieved,” Nancy said. “Now there was a diagnosis and a treatment plan.”
Today, 10 years later, Nancy is in remission and sharing her story to encourage others living with vasculitis.
A Life of Teaching and Travel
Nancy and her husband, Bill, live in Southern California near the coast. Both are now 83 and recently celebrated 58 years of marriage. They spent their careers as public school teachers. Although they never had children of their own, their lives were full of students and busy classrooms.
Travel was another shared passion. Over the years they explored much of the US and visited countries across Europe, interested in art, history, and museums. After retiring, Nancy developed a love for genealogy and became active in several heritage societies. Life was active and fulfilling—until subtle health changes began to appear.
Symptoms That Didn’t Make Sense
Looking back, Nancy isn’t sure exactly when the disease began. For years she noticed trouble breathing when visiting her parents in southeastern Arizona. Because the town sits nearly a mile above sea level, altitude seemed the likely explanation. But the symptoms slowly worsened.
Her hearing deteriorated and she eventually needed hearing aids that helped only somewhat. She also began noticing numb spots in her feet and calves. The fatigue was the hardest part. “I was so tired all the time,” Nancy said. “Everything became a chore.”
She repeatedly shared these concerns with her family doctor and cardiologist, but tests showed nothing unusual. An ear, nose, and throat specialist treated her frequent sinus infections and referred her to an allergist, suspecting allergies or asthma. But allergy tests were negative.
During one appointment, however, the allergist noticed Nancy was wheezing even though she had done nothing strenuous. After a quick breathing test, the allergist immediately called a pulmonologist, Dr. Andres Giron, and sent Nancy to see him the same day.
Finally, a Diagnosis
Dr. Giron initially suspected asthma, possibly triggered by dust exposure while Nancy was cleaning out her brother’s home in the Arizona desert. But treatment didn’t help. A CT scan of her lungs was ordered next. After reviewing the results, Dr. Giron told Nancy she needed to see a rheumatologist immediately.
By that time, her health had declined dramatically. “I had started using a cane because I was so weak,” Nancy recalled. “Walking across a room could completely exhaust me.”
Unlike many people with vasculitis, Nancy never experienced severe pain, which may have made the disease harder to recognize. At age 73, rheumatologist Dr. Shariar Cohen delivered the diagnosis: MPA. “He sent me upstairs to the infusion center right then,” Nancy said. “No questions—just start treatment.”
An aide helped her get there because walking had become so difficult. Even with the seriousness of the diagnosis, Nancy felt relief. “Finally, someone knew what was wrong and the doctor had a definite plan of action.”
Treatment and a New Normal
Nancy began treatment immediately, including Rituxan® infusions and other medications. She ultimately completed five years of Rituxan therapy. Steroids were one of the most difficult parts. “The weight gain from steroids was especially hard,” she said. “I had always been thin.”
Nancy is now in remission, though she has experienced one major flare that required additional Rituxan and corticosteroids. Her doctors believe she likely had vasculitis for years before it was diagnosed. Before her diagnosis, Nancy had never even heard of vasculitis.
Adjusting to a Different Life
Living with vasculitis has changed Nancy’s daily life. She moves more slowly and has less energy than before. “No more taking care of others,” she said. “Now it’s my turn to receive.”
Gardening—once one of her greatest joys—became too physically demanding. Today a young man helps maintain the yard while Nancy supervises and enjoys conversation.
Travel is less frequent and trips are shorter to limit fatigue and reduce exposure to illness. Through it all, Nancy says her husband has been her greatest support. “Bill is my caregiver, and he is wonderful,” she said. “I could not have survived without his love, concern, and constant assistance.” Then she added warmly, “He has earned a lot of stars for his crown.”
Nancy’s Advice
After her diagnosis, Dr. Cohen encouraged her to learn as much as possible about vasculitis. “Knowing what vasculitis is and what patients are up against really helped,” she said. Nancy now prepares carefully for every appointment, bringing a typed list of questions and concerns.
For people newly diagnosed, she offers simple advice. “Read as much as you can about your disease and ask your doctor a lot of questions.” But she also encourages patients to maintain perspective. “Try not to be angry or depressed,” she said. “It’s just a different way of living.” And when energy is limited, she suggests using quiet moments well.
“Use your down times to relax, read, and reach out to friends and family.” Nancy also reflects on the many people who have supported her along the way. “I have met so many wonderful doctors, nurses, and medical staff,” she said. “I have been blessed—there is no doubt.”