The migraines, exhaustion and shortness of breath have existed dating to before Darcy Havel-Sturdevant was diagnosed with COVID-19 in April 2020. The shortness of breath has improved a bit but the rest remain going into the Christmas holiday season.
So do dizziness and confusion.
“Most days, I’m extremely exhausted, and tired and it’s hard to even do anything throughout the day,” Havel-Sturdevant, 34, of Iowa City said.
Havel-Sturdevant is a “long-hauler” — someone who cannot shake illness that the highly contagious COVID-19 creates, leaving them to suffer with symptoms long after they no longer test positive for the coronavirus. The medical term for this is Long COVID Syndrome.
Studies show one of every four people who have COVID-19 suffers long-term effects. One in 10 health care workers who had mild COVID-19 was a long-hauler in a study reported last April.
IowaWatch has followed Havel-Sturdevant’s post-COVID problems since first reporting about her in March. She said in a recent interview that her confusion is especially difficult.
“I go to one place and get halfway there and forget why I was going. Or, like, if I was planning on going to Burger King, for example, I could end up at Hardee’s or Wendy’s,” she said.
“You know, like, just everyday tasks have been 10 times harder because of that.”
Havel-Sturdevant said she is taking medicine ordinarily prescribed to people with Alzheimer’s disease to help with her memory problems. Alzheimer’s is not curable but medication can change how the disease progresses in some patients. It is not connected to COVID-19.
One of her doctors has recommended cognitive rehabilitation, she said, but she prefers staying home and taking medicines. “With the COVID numbers, I’ve been really nervous about going out in public. You know, I’ve survived this once and it’s left me with all these problems. I just can’t imagine if I got it again or brought it home to my family. So I’m trying to lay low.”
Havel-Sturdevant and her husband, Gabe, have a 4-year-old daughter, Rayne. Her elderly mother also lives with the family.
COVID-19 affects multiple organs in the body, including the lungs, heart, eyes, liver, bladder, kidneys, pancreas and brain, as well as nasal passages. Fatigue is a consistently reported problem for people with Long COVID Syndrome.
The National Institutes of Health (NIH) launched in September a Researching COVID to Enhance Recovery (RECOVER) Initiative. The program’s goal is to understand what is happening biologically in people recovering from COVID-19 and develop clinical trials for possible solutions, Dr. Walter Koroshetz, director of the NIH’s National Institute on Neurological Disorders and Stroke, said at a Nov. 17 NIHCM webinar. NIHCM is the nonprofit National Institute for Health Care Management Foundation.
“The good news is, we really have an army of people working on this problem now,” Koroshetz said.
“The basic science of fatigue will really help us now, I think, as we’re facing this problem of the post-COVID situation.”
A group of medical professionals banding together as the COVID Patient Recovery Alliance has thrown its endorsement to the NIH efforts and making sure long-haulers get help with their medical problems.
“We need community awareness so that people that are experiencing these vague signs of fatigue, or depression or sleeplessness, can actually be channeled into the system,” Dr. Brett Giroir, a distinguished visiting executive at the healthcare consulting firm, Leavitt Partners of Salt Lake City, said at the NIHCM webinar. IowaWatch attended the webinar virtually.
Havel-Sturdevant worked at University Hospitals in Iowa City as a unit clerk until having to give up the job late last year because she couldn’t be there. At home, her family sees the suffering.
“I think that it’s really hard to witness,” she said. That especially is difficult for Rayne, who will be 5 early next year.
“I think it’s just really hard because she wants to play with other kids. And she sees other kids and wants to interact with them. And we just have to, you know, remind her: like, ‘keep your distance, wear your mask. You’ll be able to play with them eventually.’
“You know, this pandemic can’t last forever.”
Havel-Sturdevant said she encourages people to get the COVID-19 vaccine. She and her husband are up to date with boosters. She said she is not a political person but disagrees with the approach Gov. Kim Reynolds has taken to dealing with the coronavirus this year. She did not vote for Reynolds in 2018, she said.
Reynolds has urged Iowans to get vaccinated but voluntarily, not under a mandate. A Des Moines Register/Mediacom Iowa Poll reported on Nov. 17 that 53% of Iowans approved of the job Reynolds was doing, including allowing businesses to return to normal work during the pandemic and signing into law a ban on mask mandates at public schools.
The poll, for which Selzer & Co., of Des Moines questioned 810 Iowa adults on Nov. 7-10, had a margin of error of plus or minus 3.4 percentage points.
A federal court lawsuit challenging Iowa’s mandate ban at schools is pending in the U.S. Court of Appeals after a U.S. District Court judge issued a preliminary injunction against the law in October.
“I know COVID is new and new is scary,” Havel-Sturdevant said. “But if you think about it, kids have had to get polio vaccines, measles, mumps, rubella. There’s the yearly flu vaccine. There’s all sorts of vaccines. Think where we’d be if we didn’t have the polio vaccine.”
Home for the holidays
She and her husband canceled plans for a second year to have family for Thanksgiving because the coronavirus still is being diagnosed and there are predictions of a bad flu season ahead. Christmas is up in the air, depending on COVID-19 infection numbers for Iowa, she said.
“I’m sure others would say ‘you only live once’ and blah, blah, blah to justify the risk but those people might not have experienced severe pneumonia and almost died within a few days,” Havel-Sturdevant wrote in an email the Tuesday before Thanksgiving. She was trying to get rid of a cold and helping a family member with some personal matters.
“I never want to ‘not’ be able to breathe again and so I’ll safeguard, however, I need to, to hopefully get through this pandemic and not be another statistic.”
The email was an example of being a realist, she said, which she has talked about in IowaWatch interviews. That same realism leads her to think that long-haulers should not expect a miracle cure to change their situations, she said.
“Look at it as: I’ve got these symptoms going on. Find a particular doctor that handles those symptoms. Get tested. Try and see if you qualify for a diagnosis. And then go and find treatment for those diagnoses.”
Keep advocating for yourself, she said. “You just have to keep pushing and pushing until you find somebody that will listen to you.”