'There is hope:' lasting symptoms from COVID-19 impact patients' recovery

LORAIN — When Tony Rangel came home from a 10-day stay at Mercy Health this year, being on oxygen made him feel like life as he knew it was over. The 81-year-old was diagnosed with COVID-19 in early January, quarantining from his wife of 58 years to keep her from getting sick. He slept in a recliner on the first floor of their Lorain home, an oxygen tank by his side — something he feared would be a permanent addition to his life. "The lung specialist came in to talk to me, he said we're going to release you. You're going to be on oxygen," he said. "I says how long, he says — 'Two days, three days, a month, six months. ... It depends on you. Sooner or later you could get off of it but it's what you do in between the time' — that's when I made up my mind, I'm going to go and get some help and put 100 percent in." After coming home on oxygen and spending a month sleeping in the recliner downstairs while his adult daughter helped take care of him, Rangel decided to do his own exercises to try to get himself off the supplemental oxygen. The next thing he knew, he was looking for a referral for Mercy Health Lorain's pulmonary rehab program. "I was on oxygen 24/7 (when discharged)," he said. "Today I'm off of oxygen during the day, I'm able to do my work and do a lot of hard exercises and I was off oxygen during the day but I had to have oxygen during the night. So I finally got off of oxygen during the night ... that's because I was going to the pulmonary rehab." Mara Barnes, a nurse with Mercy's pulmonary rehab program, laughed thinking about Rangel. He often had to be told to slow down while working through the exercises. "We have a few elderly, like Tony, and he's our superstar because his age didn't seem to deter him from improving the way he did," she said. Rangel is far from the first COVID-19 patient to pass through a Lorain County hospital with longstanding issues. COVID long-haulers — a term coined by an elementary teacher in Washington state that quickly stuck — refers to patients who have lasting effects after initially recovering from the virus. Unlike Rangel, many are in their 40s and 50s, Barnes said. "These are working-class people that really did want to get back to their jobs and they couldn't," she said. "They didn't have the energy. I even had a nurse that had never missed a day of work, and she'd never been sick, never smoked and as a nurse she works long days, 12-hour shifts and ... it was very heavy work. They're asking us to evaluate patients and right away I said you're not ready to go back yet. She's still on oxygen, how's she going to do that?" Before COVID-19, many of Barnes' patients in Lorain were individuals with chronic asthma or similar issues. At the height of the pandemic, the program shuttered its doors twice while nurses like Barnes were moved to work on the coronavirus floors. "It was very challenging for people," she said. "They would call at least once a week 'when are you going to open?' because some people didn't have equipment at home to exercise, they didn't want to go out in the public, so a lot of them did lose ground. When they came back to the program, we always test them again. we do a walk test on their first day ... a lot of people weren't doing as well as when they started. So we have to start at the beginning to build them back up again." Similarly, pulmonologist Dr. David Rosenberg is seeing middle-aged patients with persistent symptoms after recovering from coronavirus as he and others work to set up University Hospital's new COVID-19 recovery clinic. Based out of the Ahuja Medical Center in Beachwood, the program looks to connect multiple specialists to treat individual patients' lasting effects from the virus. He estimated of the 1.1 million to have a coronavirus diagnosis in Ohio, 110,000 to 220,000 will see long-haul symptoms. "It affects all ages," he said. "There may be some studies that older folks are more susceptible, but it clearly is an equal opportunity of illness. Just because your younger doesn't mean you're immune from this disease." What causes persistent symptoms like shortness of breath, fatigue, disrupted sleep, kidney problems, blood clots and others is unknown. Some patients with the most severe cases while hospitalized will recover without lasting effects — others whose cases didn't require hospitalization in the first place could see long-haul complications. Rosenberg said some could be caused by co-morbidities like diabetes, inflammation or high blood pressure, but research is underway to connect the dots. "That's what I think is frustrating, even for the public because that's why I think people resisted some of the mask wearing — they knew people that it was just a little dose of the flu and they're fine," Barnes said. "But other people were so very sick, very sick and if you worked on the COVID floor you knew. This is nothing to mess around with. We have to take good precautions." Barnes spent about two weeks working on the hospital's COVID-19 floor, before rotating to giving fellow health care providers their vaccines. She remembers warm rooms, with loud ventilation machines in them. She and other providers had little time to spend with each patient as it took so long to gown up and get supplies. "It was heart-wrenching because people were lonely, isolated and they were so sick," she said. Rosenberg stressed not all long-haul symptoms are confined to a patient's lungs or heart. Behavioral health issues like depression, anxiety and post-traumatic stress disorder can cause memory loss, brain fog and a loss of concentration. "These are all real symptoms that affect people," he said. "There shouldn't be a stigma attached if people feel that way. ... They really need to go to the doctor and address the whole issue." Outside factors can also affect a person's recovery, such as if someone loses their job or health insurance because of their illness, or face food or housing insecurity, he said. The COVID-19 Recovery Clinic at University Hospitals looks to open next month. It will combine multidisciplinary physicians with social workers and other support services to address an individual patient's needs to recover from lasting symptoms. Rosenberg emphasized the clinic will be open to patients of all ages, through a partnership with Rainbow Babies and Children's to serve patients under 18 years old, and all incomes. If someone is uninsured, or underinsured, there are options available, he said. "It's not the situation where you can't come into the clinic unless we know you have insurance," he said. "We'd have to figure out if they're not insured to work with the hospital to make sure they're not getting a crazy bill, but we can work with them." Mercy Health also has options for patients, with financial assistance programs available. The pulmonary recovering program does require a doctor's referral, Barnes said. Barnes and Rosenberg stressed if someone is having lasting symptoms affecting their daily lives to call their primary care physician — and that there is hope. "Although they're affected with an illness, which is real and can cause many different manifestations, there is hope that there can be an approach to healing, a pathway to healing," Rosenberg said. "We want to help them along that pathway." Mercy's pulmonary rehab program fits a need, Barnes said. Whether it is one that will disconnect patients from COVID-19 completely, is yet to be seen. But either way, they'll be there, she said. For Rangel, his drive to get back to gardening for senior citizens and detailing cars meant he pushed himself to get off the 5 liters of oxygen he came home with. It wasn't a quick process, and at times a frustrating one, but he didn't want to sit there with a "hose in (his) nose" going nowhere. "But every move and everything I do, I do it the hard way instead of trying to take shortcuts and not help myself," he said. "You've got to really put 100 percent in it to help your body." Contact Carissa Woytach at (440) 329-7245 or cwoytach@chroniclet.com.