Camas resident Jessica Dudley started to notice her symptoms back in 1997.
As a teenager, she would frequently faint. When she lifted weights, her arms would tremble, so much so that she was nicknamed “Shakes” in high school. In spite of that, Dudley won a scholarship to play golf at Portland State University. But with time her athletic ability began to decline, and her symptoms worsened.
After more than two decades of searching, and 10 surgeries, Dudley, 41, was finally diagnosed in November with Ehlers-Danlos syndrome, mast cell activation syndrome and postural orthostatic tachycardia syndrome.
As Dudley puts it, her body is like a “house that’s built with weak materials.”
That means Dudley regularly makes trips to the emergency department, and needs in-person consultations and medical treatment. But since the coronavirus pandemic altered medical care for non-urgent procedures, she’s one of many people who haven’t caught the virus but have been deeply affected by it.
Phone calls or video chats only do so much for patients like Dudley.
“We finally figured out what I have in November, and we’re finally getting answers and it’s put on hold, so it’s frustrating,” Dudley said.
The pandemic’s collateral damage
As Washington and Oregon start to relax restrictions on non-urgent medical procedures this month, Dudley is frustrated by the way care for people like herself has been handled over the last six weeks.
Dudley supports physical distancing measures and abides by them. But she’s upset by what she considers to be a lack of planning around how to help people with chronic pain, or serious medical conditions, even if their care does not require immediate procedures.
As Dudley said, “elective does not mean minor.”
“We feel like collateral damage,” Dudley said. “We feel forgotten about.”
Since the pandemic began, Dudley had a neurosurgery consultation appointment get moved from an in-person visit to a phone call. The surgery might be pushed into the summer or fall, even though, Dudley said, she has had 11 paralysis episodes in the last two weeks that are potentially tied to this problem. Each episode can last for hours.
The episodes also might be tied to a muscle issue, which was supposed to be examined in March. Dudley’s neurologist considered that examination “urgent,” but it still has not taken place.
A follow-up appointment for sleep apnea, caused by EDS, was moved to July, even though doctors indicated she may need breathing support while sleeping.
A nerve biopsy test has also been pushed to July.
Dudley was finally able to see a physical therapist to help with pain management this week, after the therapist tested positive for antibodies, and Dudley found the therapist a protective N95 mask.
Dudley recently told a doctor that she feels alone. The doctor responded, “It’s not that you feel alone. It’s that you are alone.”
“There needs to be a place for medically fragile patients,” Dudley said, “so our health does not spiral out of control, or we die while waiting for help.”
New guidelines for medical care
With Oregon set to lift some medical restrictions today, and Washington following suit, it appears help could be on the way for Dudley and others. Like many Clark County residents, Dudley receives much of her medical care in Portland.
Even with both states lifting restrictions, questions remain.
Restrictions were placed on non-urgent care to help medical facilities conserve personal protective equipment and bed space. Washington’s original order applied to all procedures not expected to cause harm to patients if delayed for three months, but the order did not define “harm.”
Gov. Jay Inslee’s newest medical guidelines, released Wednesday, offer criteria for determining harm to patients, but care decisions ultimately will be left up to individual clinicians.
Washington and Oregon medical facilities will need to stock a minimum threshold of personal protective equipment supplies in order to restore some care. Protective equipment has been in short supply in both states. Medical facilities will also need to meet other safety criteria.
That will be to just get the entire health care system running again. For now, Dudley will continue to work from home, doing freelance marketing writing. Many days she can’t get out of bed because of paralysis episodes, pain or other complications. Sometimes she works lying down.
Writing is an outlet for Dudley to share her story, and potentially create good from struggle. She hopes that her writing connects with people.
“I’m still making a difference in the world while lying in my bedroom,” she said.
She reads self-help books and keeps positive people in her life. But she’s worried about a backlog of patients needing care, not to mention that a resurgence of the virus could mean revisiting medical restrictions.
She has a consultation for cervical spine fusion surgery next week. The ligaments that connect Dudley’s neck to her head are weakened, and doctors are worried that Dudley’s skull could crush her brainstem. Surgery might have to wait until the summer or fall, which leaves Dudley with questions, not answers.
“What am I going to be like by then?” Dudley asks.