For 13 years exercise therapist Kathy Geller has lived with osteoarthritis (OA), and she talked recently about the financial and emotional costs of the disease. By age 63 she had had intraarticular injections in both hips, periodic cortisone injections in various joints, and injections of hyaluronic acid in both knees. She had taken nonsteroidal antiinflammatory drugs of all kinds, visited orthopedists and rheumatologists, worn knee and wrist braces, and had custom orthotics made. She had undergone physical therapy, occupational therapy, and several operations: joint arthroplasty and tendon transfer on both thumbs, shoulder surgery, surgery on her right wrist because of a triangular fibrocartilage complex and on her left foot to repair a shredded anterior tibialis tendon. She had had epidural injections for severe low-back pain, and she and her husband had moved from a house to a condo. And the pain forced her to curtail her work life substantially.
"I see my doctors, I take my medications, I use hot and cold therapy," she said. "I keep my weight stable and I'm active. But still, despite all of that, OA has taken its toll."
Geller's emotional story opened the State of the Science in the Prevention and Management of Osteoarthritis symposium hosted by AJN, the Hospital for Special Surgery, and the National Association of Orthopaedic Nurses in July 2011. She told the more than 40 experts in nursing, medicine, physical therapy, and other disciplines that, despite being extremely active for more than 40 years, she still struggles and is grateful for the support and treatments available to her. But her journey has not been without frustration.
"As a person with OA I felt like an orphan in the arthritis world," she said. "I am thrilled that medications and biologics are available for folks with [rheumatoid arthritis]. For many it has changed their lives. But as a person with OA, I am frustrated that research was not there for me and others like me."
What has kept her going, she said, has been her trust in her physicians and others who have supported her over these years. When asked whether she thought an orthopedics nurse liaison would benefit her by providing support, stress relief, and education, she said that because of her work-for several years before her retirement she led exercise and rehabilitation groups at the Arthritis Foundation's New Jersey chapter-she is knowledgeable medically and in that way atypical.
"Someone with OA going through knee replacement absolutely could benefit from an RN who could take the time, because the physicians don't have the time," Geller said. "But I'm a very disciplined person. I didn't need somebody for that. I'm the ideal patient. I do everything they tell me. But it gets more challenging to mentally and emotionally cope."
When reached in January for an update on her health, Geller said that the six months after the symposium had been painful ones for her. She had a third epidural injection in her lumbar spine in late July, and she had been managing her pain well with exercise and acupuncture. But during a family trip to Florida in December she tried to play golf-until the spondylolisthesis in her lumber spine made that impossible. She is now considering spinal surgery (decompressive laminectomy with spinal fusion).
She remains optimistic and considers herself fortunate. But sometimes, as she told the health care professionals gathered at the symposium, she can't escape what she sees as inconsistency in how clinicians and the public regard OA as opposed to other diseases.
"Stroke gets front-page news," she said, "but people don't die of OA all at once. Your life is whittled away"-Joy Jacobson