What it's like to be a COVID-19 'long-hauler': fatigue, persistent symptoms, organ function changes

Some days Cordell Hilderman wakes up in the morning with energy. Other days he wakes up feeling fatigued. But more often than not, it's the latter. In fact, Hilderman usually feels pretty good until early to mid-afternoon. 

Then his body takes a turn. 

"I just get this stronger malaise come over me. I can describe it maybe as a headache. But it's not like headaches that we normally get. It's just kind of more of the tightness, a feeling of fatigue and discomfort at the same time," said Hilderman. 

So, what is going on? 

Hilderman is what many are calling a COVID-19 "long-hauler", which means he has experienced symptoms long after being cleared by public health and testing negative for the virus. 

Hilderman, who is a pharmacist and pharmacy manager in Saskatoon, was one of the first people in Saskatchewan to be diagnosed with COVID-19 back in early March. 

"I was honestly shocked when [the test] came back positive. I hadn't noticed any new symptoms or anything like that. But then within a day or two after the positive result, more symptoms started to come. A lot of really heavy duty fatigue. Joint and body aches, and I had to sleep about 10 hours a day," said Hilderman. 

Hilderman did what he was supposed to do. He stayed home, living in the basement to protect his family from contamination. He rested.

Hilderman never had to go to the hospital, but experienced shortness of breath, coughing and loss of sense of smell. 

Memory was affected

By early April, he was cleared by public health and was able to go back into work again. 

"Once I was back at work for a week or two in April, I noticed that I had gaps in my memory, like stuff that I had done myself at the end of August, beginning of March, that I had no recollection of doing," Hilderman said. 

"That was a little bit of a signal that my brain isn't quite working like it normally does. I think my brain function had slowed down a little bit. It was affected."

When Hilderman contacted public health and was re-tested for COVID-19, the test came back negative. Still, the symptoms persisted. 

At the time, there was not a lot known about COVID-19 long-haulers. Hilderman says his doctors were learning about the virus along with him. 

In June, after experiencing no diminishment of symptoms despite resting, Hilderman decided not to go back to work. Nowadays, fatigue and malaise show up after mental exertion or too much physical exertion. 

"I've done really nothing for exercise since the end of May. And my doctor wants to keep it that way for right now."  

Effects of long COVID

Hilderman says his doctor has diagnosed him with post-viral fatigue.

"It's similar to what we see with some other viruses. It's a post-viral fatigue and we see this with West Nile. It usually takes three to six months [to go away]."

Hilderman says he spends much of his time researching the latest news and findings on COVID-19.

"They know that there are other organ systems affected. There's cognitive effects which I have been obviously experiencing. There's cardiovascular effects, effects on the heart. And the lungs as well. Kidney functions may be affected as well," Hilderman said. 

Hilderman has had tests indicating that his heart and kidney function are not where they used to be. He says the doctors are currently investigating that. But, he said, no one really knows what the long-term effects of COVID-19 are. 

Hilderman has been public about his experience as a long-hauler because he wants people to take the virus seriously. 

"We hear a lot of people saying, 'why are we making such a big deal of COVID, because the death rate is very low' … The death rate is one thing, but nobody's been talking about the possible long-term morbidity that could be associated with this disease."

In the meantime, Hilderman is listening to his doctors, resting and limiting stress. He says that's the key to making sure his post-viral fatigue eventually ends, rather than becoming chronic. 

CBC Saskatchewan wants to tell more stories about how the pandemic is touching the province's most vulnerable and marginalized populations. How has COVID-19 affected you? Share your story with our online questionnaire.