Alabama is still dealing with the Delta variant of COVID-19. The more contagious coronavirus strain first swept through the Gulf Coast in July and August. It then spread to the rest of Alabama. Delta hospitalizations in Alabama peaked last month with almost 3,000 patients.
COVID-19 numbers are declining in most parts of Alabama, but there are many left with lingering symptoms called long-COVID. Up to 30% of COVID-19 patients develop “long COVID” symptoms. That’s defined as symptoms that last more than three months after the acute illness. The statistics tell only part of the story. Long-COVD is so new there are few medical answers and that’s a frustration for both doctors and patients.
“The reality is right now, we really don't know a lot about it,” said Dr. Haley Ballard.
She’s an Internal Medicine Specialist in Mobile. She said it’s not rare to see long-COVID cases in her clinic, but every patient is different.
“Right now we don't know who's more likely to get post-COVID than other patients,” Ballard said. “We just need more information and more studies to show what makes somebody more likely to have post COVID symptoms. Is there anything that we can do to prevent it? Right now we just don't have the information for that, because this is so new.”
Brain fog is one issue. So are symptoms like fatigue, cough, muscle aches, shortness of breath, headache, palpitations, or increased heart rate. Ballard said COVID feels like it has been here forever, but it’s still relatively new.
“We're really just looking at just over 18 months where we really started to see a lot of those infections in our area. It's unclear exactly how long. I have some patients who have gotten over their post COVID symptoms at about the three to six month mark,” Ballard said. “They realize, hey, I feel better. And all of these other symptoms are better. I have some patients who are at a year and are still dealing with some of the fatigue, body aches and things like that.”
For most COVID long haulers, symptoms may be mild and last a few months. For others COVID changed their lives.
“Before this all hit, I thought COVID was something made up,” said David Eckenfels.
He planned and saved for years to move from Atlanta to Fairhope. He and his wife Deanna were living their dream when David caught COVID at work in July 2020.
“When I caught it, it just tore me up,” Eckenfels said. “The doctor, he couldn’t explain it to me, or I couldn’t get it right. The doctor said it was like a bomb that off in your chest tore up your lungs.”
David has worked every year since he was 15. He expected to work until he was 67.
“We had a long heartfelt talk somewhere in there. I don't remember when, but we decided that if they don't release me, and it get to where I turn 62, I turn 62 in October,” Eckenfels said. “It's going to be easier to just retire. We can't keep living on one paycheck. We sold the house because we ran out of money. This was nothing for the plan of what we were going to do.”
“COVID turned our entire lives upside down. Every aspect of our lives have changed,” Deanna said.
She’s David’s wife for 25 years. Long-haul COVID is also hard on the spouses and partners who see the changes in the person they love. They also become the caretaker and take over more duties.
“Every day is something different. He’ll tell me so-and-so called, and he can’t. There's a pen and a piece of paper on the table,” Deanna Eckenfels said. “He knows that when he answers the phone, he needs to write down names and numbers and what they're saying. I have to go back after him and call these people and say he didn't remember the whole conversation. Can you explain to me what's going on? He's one of the smartest people I've ever known and he can figure anything out. And he has the patience of a Saint. And it’s gone. He's not stupid now. Our big thing at night was watching Jeopardy together. He would get almost everything and he can't do that now. I know it's there and he tries to spit it out. He just can't get it out in time.”
Dean said they are starting to accept that this is the way David is and find simpler activities they can do together. If he gets better, that’s a bonus.
“Even if he doesn't go back to normal, he's still my world. So we'll get there,” Deanna said. “And if we don't, we'll just adjust and figure out how to live that way.”
And, David’s story isn’t unique.
“I still couldn't stand up. So my fiancé, Kyle, packed me up the next morning and drove me directly to UAB,” said Emily Esposito.
She caught COVID in March 2020. Esposito thought it was the flu.
“I walked in and I was admitted on the spot,” Esposito said. “The following night, the bottoms of my lungs collapsed. I am so thankful that he drove me up there because if I wasn't in a hospital, I have no idea what would have happened.”
Esposito was 27 and had run a 10K two weeks before. It was at the beginning of the spread of COVID and the hospital didn't have enough tests, but the doctor said she presented positive and sent her home with an inhaler. Two days later she could barely walk and was admitted into the hospital for the first time. The new COVID unit quickly hit capacity and she was discharged, but she was still sick. Esposito started having seizures and went looking for answers at the Mayo Clinic in Jacksonville, Florida.
“My body is basically in fight or flight at all times,” she said. “It flipped everything upside down and just ignited so much that my body isn't able to calm down and try to heal itself. It's in constant attack mode.”
Esposito also had hair loss, body aches, but now has faint taste and smell.
“I'm working with a bunch of doctors to make sure I'm getting all the right nutrition. It’s a low inflammatory diet because my body is so severely inflamed,” she said. “I'm tracking all my exercise, all of my food, and my water intake. We're trying out different medicines just to see if we can get my body to calm down. It is ever-evolving.”
Esposito and her boyfriend Kyle were supposed to get married last year, but postponed it to this October. It gives her something to look forward to. Emily has a good support system, an understanding employer, and access to doctors willing to try anything, but working through insurance is a challenge and changes have left her with back bills to pay.
“Insurance management should be a full-time job in and of itself,” Esposito said. “It has been a nightmare. I'm so thankful for insurance in general, but managing that on top of everything else has been really hard. My insurance specifically continues to change their policies on COVID. And then on top of that is the brain fog, I've had crazy memory loss. And so you come in and have doctors talk to you and you don't remember half what they say. So I've actually recorded a lot just so I can remember what the doctor said about this or that."
Researchers are still piecing together what long COVID is and what to do about it. Supporters of vaccination point to evidence that symptoms of long COVID ease once a patient gets their shots. While this goes on, Esposito and the Eckenfels hope their stories raise awareness over long-COVID and help those suffering from it to get the help they need.
