Curiosity could be the key to long COVID

A former Saskatoon pharmacist says being on the other side of the counter has given him a new perspective on how pharmacists and other healthcare workers can help patients with rare or chronic diseases. Cordell Hilderman has been struggling with the debilitating symptoms of long-term COVID-19 for almost two years. After 25 years in pharmacy, he bases his comments on his own experience. “I can think of specific patients that I’ve known throughout the years, who come in, and they’ve got some weird condition that you’ve never heard of before, and it’s easy to kind of gloss over that,” he says. Read: AHS creates resources to help treat long COVID symptoms Today’s expanded role has pharmacists dealing with more stress, a heavier workload, and more patients than ever before, he adds. But Hilderman believes pharmacists and other healthcare providers are the ones who know how to research and find credible information. “From a patient perspective, it means the world to the patient when they’re dealing with a healthcare provider who's curious about the condition they have and willing to spend some time to learn a little bit more about it,” he says. “I need you to be curious.” Hilderman has been on a long journey of doctors, tests, and treatments. In the past two weeks alone, he’s seen four doctors and had six diagnostic tests, on top of the GP and specialists he has been seeing since he first tested positive in mid-March 2020. “It’s been frustrating,” he adds. “We still really don’t know any more than we ever did.” He continues to experience such symptoms as tinnitus, loss of taste and smell, short-term memory loss, post-exertion malaise, tachycardia, autonomic issues, and non-restorative sleep. He is currently being tested for orthostatic hypertension (a relatively rare condition where the blood pressure increases when sitting or standing), and he has been referred to an autonomic specialist in Calgary. Read: After long COVID battle, Iowa man decides to wed in hospital These symptoms are consistent with post-viral syndromes like myalgic encephalomyelitis or ME (a.k.a. Chronic Fatigue Syndrome), but he says some healthcare providers are still unaware of what ME is, or what treatments might be available. At the same time, there have been signs of hope in the past few months. At the end of November, he took the corticosteroid dexamethasone for three days. That resulted in a dramatic improvement lasting over a week, and for a few days he felt “almost normal” again. “And I haven’t felt that way since the whole thing started,” he adds. But it proved to be a temporary reprieve. “I did a little more activity, and then kind of crashed again last Thursday,” he says. “Any kind of mental or physical exertion can cause a crash.” Similarly, after his first COVID vaccine dose last spring, he felt a slight improvement, but after the second dose in June, he experienced continued deterioration again. “When I think about my day-to-day functioning, I’m definitely worse than I was a year ago.” The Saskatchewan Health Authority set up a Long Covid Working Group to study patients experiencing symptoms for longer than 12 weeks. The working group report, developed prior to Saskatchewan’s fourth wave and presented at the Saskatchewan Health Research Showcase in November, estimated 45,000 people in Saskatchewan would require self-management, 7,000 interdisciplinary care, and 5,000 specialist care by March of 2022. The report also includes patient responses, which Hilderman says will be key to finding a treatment. Read: Long COVID: Who is at risk? “There needs to be patient involvement with the process,” Hilderman says. “Otherwise, it’s hard to say how successful they’re going to be.” Hilderman still finds online patient groups, his own research, and social media contacts to be the best sources of information. “There’s new information coming out all the time.” Recording and studying patient experiences will help provide the key to treatment for long-term COVID sufferers. For example, after he experienced pain in the ribcage recently, a CAT scan revealed that he had a broken rib, although he can’t recall a specific incident of injury. Through his own research, he discovered an article that shows bone loss occurs in post-acute-Covid patients. “There’s still a lot to learn about this disease,” he adds. The Long Covid Working Group's report can be found here. For more about Cordell Hilderman's story, read Update on SK pharmacist with Long-term COVID-19.

Curiosity could be the key to long COVID

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