‘Life-changing’: OHSU patient on the mend following medical mystery
A year ago, Kathy Hart came back from a trip to Arizona with a bit of a rash — what she thought was a sun allergy. “I didn’t think anything of it,” she said.
Within three months, her health had worsened considerably, with muscle weakness so severe she could barely lift her head, arms and shoulders. Her condition continued to deteriorate to the point that on some days she couldn’t so much as turn over in bed.
Eventually, she got the surprising and alarming diagnosis: a severe case of dermatomyositis, a rare condition that causes skin rash and inflammation in the muscles.
By the time the southeast Portland resident saw a specialist at Oregon Health & Science University in January, her condition was dire.
“She could have died within one or two months,” said Nizar Chahin, M.D., associate professor of neurology in the OHSU School of Medicine who specializes in neuromuscular disorders. “It can be challenging to diagnose this condition — and early diagnosis and treatment is the key.”
Today, Hart, 58, is back to work as a real estate agent and steadily regaining her strength, while also undergoing chemotherapy and radiation for what turned out to be the underlying cause of her health care odyssey — stage 3 uterine cancer. Following a hysterectomy in March, her prognosis is good.
But her journey didn’t start out that way; it took complex, multispecialty care delivered by Oregon’s only academic health center to diagnose the problem and set her on the path to recovery.
She remembers the first time she met Chahin.
“When I first saw him on Jan. 5, you could tell it was not good,” she said. “I’ve learned to trust him, and I know he won’t sugarcoat anything, good or bad.”
Chahin said he recognized the need to look for underlying cancer, which can be associated with dermatomyositis.
He expedited her evaluation and admitted her to OHSU Hospital that same day. Hart was immediately started on a course of intravenous immunoglobulin and Rituximab, or IVIG, medications that target the overactive immune system believed to be attacking the muscles and skin. She learned later that in some cases, the condition can affect life-critical muscles — the heart, lungs and throat.
Once she started receiving the IVIG, her muscle strength steadily improved.
Revealing the cause
Hart initially underwent a CT scan of her whole body in search of the possibility of cancer associated with the dermatomyositis, but those results were interpreted as normal.
The underlying cause remained a mystery until her third week as an inpatient at OHSU, when she happened to pass a kidney stone; this prompted her care team to repeat a CT scan of her abdomen and pelvis. This time, clinicians spotted a slight thickening of her uterus, later confirmed by an ultrasound image. A biopsy of the uterus confirmed it was cancer.
In a roundabout way, Hart actually felt relieved to get the cancer diagnosis — it clarified the cause of her health ordeal. Plus, she said she’s been grateful for the cancer treatment provided by Casey Williamson, M.D., an assistant professor of radiation medicine, and Ross Harrison, M.D., assistant professor of gynecologic oncology.
“They’ve both been wonderful,” Hart said. “I do feel very fortunate that this is what it ended up being.”
The cancer treatment she is undergoing now will reduce the risk of cancer recurring, and, in turn, the risk of dermatomyositis developing again in the future, Harrison said.
Chahin said even though dermatomyositis is rare in the general population, Hart benefited from the fact that he specializes in diagnosing and treating the condition — and he recognized it right away. He said it’s important for more clinicians to be aware of this condition since it can be associated with cancer, which is generally better treated with early detection.
“I know how bad it can be,” he said. “She’s made an amazingly huge improvement.”
Trust, positive attitude
Looking back, Hart said two things made a difference for her recovery: trust in her medical team, and a positive attitude.
A former teacher and principal in the Portland suburb of West Linn, Hart had rarely been sick. Her body had never failed her, and she had seldom taken more than an occasional ibuprofen. Even during her entire health ordeal, she rarely experienced pain.
Yet she comes out of the experience much more empathetic for others experiencing poor health.
“When I look back, I remember all the emotion,” she said, pausing to catch herself. “The frustration, the fear — but also the exhilaration when I could lift my foot. The whole process has been life changing.”