Iowa Health Care Providers Offer Therapy, Resources To COVID Long-Haulers
Estimates suggest there may be thousands of Iowans dealing with long-term symptoms of COVID-19. For some of these “long-haulers”, the condition is debilitating, but health care providers are stepping up to offer resources and therapies for patients suffering from the still-mysterious condition.
When Keegan Parrott got COVID last June, he didn’t have health insurance and couldn’t afford to see a doctor.
As weeks of illness turned into months, the former track and field coach and Ames resident continued to struggle with persistent chest pain, headaches and fatigue, and watched as his hard-earned stamina disappeared.
“Now my workout is jog one minute, run one minute, jog one minute, walk 30 seconds. And I repeat that,” Parrott said.
It’s not the long distance runs he used to do, but it’s progress, he told IPR back in March.
Like many who are uninsured or underinsured, Parrott turned to friends and online communities for advice.
One acquaintance told him to monitor his heart rate to prevent what doctors call exercise intolerance. Many long-haulers report an inability to exercise and may suffer even worse fatigue after working out.
“I went out and actually watched my heart rate and saw how slow I actually had to go. So the first rounds were really slow with a lot of walks tossed in,” Parrott said. “If my heart rate got too high, I walked. My heart rate got too high, I walked.”
For Parrott, it helped him keep moving and rebuilding his strength until he was finally able to see a provider.
"Really what we're seeing is that patients of all walks of life, all ages, all types of comorbidities, from completely healthy to people with chronic illness, they're all presenting with various degrees of this."-Alejandro Pezzulo, University of Iowa Hospitals and Clinics
Estimates suggest there may be thousands of long-haulers in Iowa.
Providers across the state are working to reach long-haulers, to get them care and to drive home the message that long COVID is a real condition.
“Really what we're seeing is that patients of all walks of life, all ages, all types of comorbidities, from completely healthy to people with chronic illness, they're all presenting with various degrees of this,” said Alejandro Pezzulo, one of a team of physicians staffing the post-COVID clinic at the University of Iowa Hospitals and Clinics.
The facility has seen hundreds of patients from across the state since opening last summer.
Doctors take extensive histories and run rounds of tests to try and figure out the mysteries of long COVID. They’ve also established a disease registry to track the condition long-term.
UPDATE: If you are fully vaccinated against #COVID19, you can resume activities without wearing a mask or staying 6 feet apart, except where required by federal, state, local, tribal or territorial laws, incl. local business and workplace guidance. More: https://t.co/FJMon7WlFO— CDC (@CDCgov) May 13, 2021
While researchers are still trying to understand what sorts of patients may be at an elevated risk for severe long COVID, some providers are concerned that, as with initial COVID-19 infections, people of color may be at a disproportionate risk for long-term symptoms.
Providers at the UI’s post-COVID clinic are doing targeted outreach to immigrant and minority communities in the state, including in meatpacking towns, in the hopes of connecting with Iowans who may not be familiar with the clinic, or may not even know they’re suffering from long COVID.
Pezzulo told IPR back in March that providers and patients are still learning from each other about this incredibly varied condition.
“Our patients try various things and then they report back to us and they tell us ‘hey this, this helped. This did not help’,” Pezzulo said. “And I think that helps us try to decide…decide what to study afterwards too.”
Long-haulers have also gotten help from neurologists, speech-language pathologists and occupational therapists.
The rehab clinic On With Life in Ankeny is offering a range of post-COVID therapies. Before the coronavirus crisis, the facility largely served patients with a range of neurological issues, including strokes, concussions or other traumatic brain injuries.
Occupational therapist Sue Sandahl says she's seen some similarities between the struggles of long-haulers and the clinic’s other neuro patients.
“They do actually have a lot of similarities to some of the other people that we've worked with,” Sandahl said. “Fatigue management is one of the big areas that I myself and the other occupational therapists are involved in.”
“We do a lot of the…it's called planning and pacing,” Sandahl explained. “We help people prioritize what is important to them and schedule that and then plan the rest of their day or the week around that.”
“A lot of people will say things like, ‘when will I be how I was prior to this?’ Which is the hardest question to answer, because I don't have a magic ball,” he said. “But at the same time, I say, ‘I can't answer that, but I'm going to do everything I can to help you get back to where you were’.”-Ryan Blumer, physical therapist, On With Life
On With Life physical therapist Ryan Blumer says some long-haulers have been so profoundly affected that even mowing the lawn or grocery shopping are now stretch goals for some patients.
“A big one is obviously returning to work, if someone can't return to work. That's very important to everybody,” he said. “Another big one is like being able to spend time with the family as in like the grandkids, being able to keep up with the grandkids.”
Brain fog is a persistent complaint, Sandahl said, leaving many struggling to recall words or to hold their attention long enough to follow a recipe.
One patient “was having trouble remembering what she read,” Sandahl recalled. “By the time she got to the end of the sentence, she had forgotten how it started, to be able to put it all together to really make sense of what she was reading.”
Therapists are able to help patients struggling with brain fog to develop strategies to improve memory and word retention and to keep track of daily tasks.
Here is my in-depth account of one #longhauler and has family, grappling with the possibility he may never recover.— Kate Payne (@hellokatepayne) April 2, 2021
Four months into his illness, walking up the stairs is a big deal, an ordeal for Mateo Salazar.
Please, please listen to his story 👇🏻 https://t.co/k6LLCluDVm
Blumer says that for many, a key to recovery is relearning how to breathe properly: using belly breathing, instead of chest breathing.
Many long-haulers have struggled with drastic spikes in their heart rate and blood pressure. Proper breathing can help bring that back under control and may help decrease fatigue and brain fog as well.
“You breathe in through your nose and out through your mouth,” Blumer demonstrated. “And then you use your hand as kind of a tactile cue of breathing into your stomach. So you breathe in through your nose, push your stomach away, and then breathe out through your mouth. And then you see that stomach kind of come in.”
Blumer says he’s seen success with patients, helping them rebuild their strength and their stamina.
But there’s still so much providers just don’t know about this condition.
“A lot of people will say things like, ‘when will I be how I was prior to this?’ Which is the hardest question to answer, because I don't have a magic ball,” he said. “But at the same time, I say, ‘I can't answer that, but I'm going to do everything I can to help you get back to where you were’.”
Researchers are still wrestling with major questions like who develops long COVID and what exactly is behind this constellation of symptoms, let alone what the prognosis is long-term.
For patients staring down the possibility of never making a full recovery, the lingering questions around long COVID can be terrifying. But providers want them to know: treatment is available.