North Vancouver woman shares heartbreaking struggle with long-COVID

As hundreds of thousands of people around the world face the challenges of being a long-hauler, one woman on the North Shore wants people to know her story so they take the virus and its consequences seriously.

Adriana Patino was 35 in December 2020 when she got infected with COVID-19, but never got better. She says it wasn’t until March of the following year that she was referred to a long COVID clinic and wasn’t able to speak to a nurse in that field until July. She adds she didn’t have her first call with a doctor until September 2021.

Adriana Patino, 37, has been struggling with long-COVID for nearly two years and hopes her story will help others and push the provincial government to make it a priority. (CityNews)

“I was considered a very severe and urgent case, but unfortunately, due to being understaffed, funding and everything, there’s a kilometre [long] waiting list for all the specialists that I need to see. St. Paul’s Hospital deemed I needed to see at least six different specialists. To this day, I’ve only seen a couple of them.”

She says despite her condition, she’s been “discharged” from the hospital, and she hopes her story also pushes the provincial government to fix the health care system, so people don’t fall through the cracks.

“It’s extremely discouraging. I’ve just been pushed out the door. I know they did try… but I still suffer. It adds on to the feeling that we’re being ignored by everyone. It’s heartbreaking. This is actually a real problem. Why is no one helping us? Why is no one trying to do something for us? Why is no one caring that all of a sudden, your life is completely destroyed? You lose part of your life. You lose part of yourself. You lose everything that you’ve been working for and there is no one to help you prevent your entire life from crumbling in front of your eyes.”

She adds things got to a point where she was referred to a specialist in her native Mexico to get help from a respiratory therapist.

Patino says her lungs have been destroyed and she has cognitive issues which make it hard to do the things she used to love like reading, texting, listening to music, or being able to hold a conversation.

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The now-37-year-old used to be a competitive swimmer and spent her spare time going hiking and camping, but now she says she can barely leave the house.

“I can’t go outside for more than 10 minutes because of my neurological issues. I can’t be on a car ride for more than 10 minutes before getting extremely sick. If I stand more than few minutes, I start feeling symptoms coming up, my vision starts going blurry, parts of my body go numb. I have very intense heart pain. Managing that on its own is incredibly difficult.”

Patino, who used to work as a groups benefit consultant, says her mother and boyfriend care for her nearly full-time, however, her partner was diagnosed with long-COVID shortly after her and in a bid to make ends meet, the two have sold some belongings.

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Patino is now in a local long-COVID program, and she feels she is making progress but admits it’s going to be a very long road to recovery.

“I feel trapped. Trapped and exhausted. It’s a fight with my own body, with my own mind, fighting with the doctors, with the government — it’s been a fight in every single level that you can possibly imagine. I do feel trapped and not just because I can’t leave my house. I feel no breathing room anymore. I’m hanging by a thread.”

CityNews reached out to the Ministry of Health for comment on the long-COVID situation in B.C. but has yet to hear back.

Long-COVID program

The program Patino is in is led by ABI Wellness, which along with another company, offers a three-month virtual program to help people who are long haulers.

CEO Mark Watson says there are still a lot of people who are struggling with what’s known as brain fog and other cognitive challenges, but he feels more people are becoming aware of the condition.

“I guess the big thing for me is to make sure there are more options available for people in need because sadly there aren’t very many options. For people who are listening [or reading] to the story of this individual, there is a reason for hope. The brain has remarkable capacity for change throughout a lifetime. It’s a thing, it’s real. It’s neuroplasticity and with COVID-19, they have a lot to learn still, however, I think it’s important to keep moving forward.”

The company, which is based in Langley, says the program is open to anyone across the country but they’d like to start at home by helping British Columbians.

“We’re really committed to providing information, education, technology to help professionals help others. I think not doing anything is also a choice but trying to investigate getting good options and opportunities, that is a choice.”

A lot of research still needed

One of the long-COVID clinics in Metro Vancouver is based at Vancouver General Hospital.

Dr. Zachary Schwartz is the lead physician at the VGH clinic, and he says the patients they deal with list brain fog, fatigue, and respiratory issues as the main symptoms. He says scientists around the world are racing to learn more about the condition and what’s difficult is it varies from person to person.

“There is no true definition for the actual disease. Some people are debilitated in bed, whereas some people just have perhaps the lack of smell and taste after two years, which may not sound to cumbersome but if you’re a sommelier or a chef… it’s obviously a greater issue.”

Schwartz says it’s unclear why some people get long-COVID, and others don’t, following an infection.

“I still think we’re quite a ways away from knowing for certain what is causing it and I think part of the problem is also that because it’s such a varied presentation, it’s quite difficult to pinpoint one exact cause and while there might be a nice, unified diagnosis for a lot of people, there might be a different mechanism for different people feeling their symptoms.”

He says they also don’t know if long-COVID is a temporary or permanent condition.

“It’s probably going to be a combination of the two but fortunately, the latter is what we’re seeing more often, that the majority of people are improving over time with their symptoms. What we’ve looked at here and have been unable to identify with some of the research is how to predict who will recover on a shorter timescale, whether people are getting better at three months, six months or 12 months but we’ve seen improvement over 18 months and two years.”

Schwartz says from what they can tell, middle-aged women have a higher chance of getting COVID-19 but don’t know which one of them would get long-COVID.

Earlier this month, the World Health Organization (WHO) says the end of the COVID-19 pandemic is “in sight,” but some Canadian experts had warned it would be premature to declare the global health crisis over. Their comments came after WHO Director-General Tedros Adhanom Ghebreyesus announced the number of deaths attributed to the virus worldwide in early to mid-September reached the lowest point since the pandemic’s onset.

For more on long-COVID in Canada, click here. For more information on the ABI Wellness program, email info@abiwellness.com