Montana COVID program offers hope for long-haulers
By Emily Schabacker The Billings Gazette
BILLINGS – Before Denise, 51, was hospitalized with a severe COVID-19 infection, she loved how beautifully she could carry a melody and was proud of the way her words resonated when she spoke. A year after a battle with COVID dragged her to death’s doorstep, she is still too weak to sing and a low rasp lingers in her voice.
Long and arduous symptoms from COVID-19 have been known to make simple tasks like doing the dishes or laundry nearly impossible and often oxygen support is needed.
As for Denise, who asked The Billings Gazette to use only her first name for privacy reasons, she used full oxygen support for at least 11 months after returning home from the hospital and has only recently been able to decrease her usage.
“COVID takes your life as you know it. It takes your brain, it takes your memory, your breath. It takes everything,” said Denise.
Denise has lived in Billings most of her life and before spending eight days on a ventilator, she used to voice commercials for the radio. But after COVID, her lungs no longer have the capacity they once had.
“On June 11 this year, my vocal cords were so swollen and damaged, the ear, nose and throat doctor was trying to figure out what was wrong,” Denise said.
At the time of her hospitalization, Montana was beginning a steep ascent into crippling case numbers and hospitalizations. From Sept. 30, 2020, to Nov. 20, 2020, cases increased by 322 percent and hospitalizations increased 141 percent.
Denise tested positive for COVID on Sept. 23, 2020, and six days later her oxygen levels dropped, sending her into the Emergency Department at Billings Clinic. Denise is diabetic, which puts her at higher risk for severe COVID illness. Her medical condition and sinking oxygen levels put her at the top of the list for immediate care. Or as immediate as possible. She spent 27 hours in the ED before a bed in the hospital became available.
Denise was initially hospitalized for 15 days spanning from Sept. 29 until Oct. 13, 2020. She turned 50 while in the hospital.
When she was well enough to walk in place for three minutes and keep her oxygen above a certain level, doctors sent her home. Her room was needed for sicker patients, Denise said.
She was home for nine days before her oxygen levels plummeted again, sending her directly into the intensive care unit and onto a ventilator for eight days.
Readmission due to COVID-19 is just one part of the medical history doctors at the Post COVID Recovery Program at Benefis Hospital in Great Falls look for when completing intake appointments for COVID long-haulers, an increasing population of patients whose symptoms persist for more than 12 weeks after the initial infection.
About 10 percent of COVID patients continue to have lasting symptoms that manifest as phantom smells or tastes, persistently low oxygen levels, debilitating brain fog, memory loss, cardiac irregularities, gastrointestinal problems, and numbness or burning in their extremities, mental and emotional distress, rash, hair loss and many more symptoms tied to multiple organ systems.
When Denise got sick, her family rallied in Billings to help care for her and her 12-year-old son. Her parents pitched in wherever they could, her dad in a hotel and her mom with her niece, and stayed from the time she was diagnosed until November 2020. One of her older sons and his wife also arrived from North Dakota. Another son, who is active duty in the military, flew in to help.
“They were my rock,” Denise said.
Denise lost significant muscle memory after more than a week under sedation and started her physical therapy while still at Billings Clinic. At the time, hospitals were operating well beyond capacity. It was during the first National Guard stint in the hospitals, and extremely ill patients lined hallways.
“You have to work hard on physical therapy and you have to be self-motivated because everyone is so busy. They told me to do these exercises three times a day, but they couldn’t get to me three times a day,” Denise said.
Even after she finally went home, she was back at Billings Clinic weekly for treatment of her lasting symptoms.
“COVID is a 30-day illness, it waxes and wanes, but by 12 weeks you should have recovered on your own,” said Dr. Brad Nieset, palliative care doctor and manager of the recovery program.
To add to the mystery, there seems to be no correlation between severity of illness and whether or not one will battle symptoms months later, according to Dr. Walter Lajara-Nanson, neurologist in the program.
“Mild COVID has been disabling as well,” said Lajara-Nanson.
The Benefis post-COVID recovery program is the only organized, multidisciplinary COVID recovery program in the state aiming to serve the estimated 19,159 Montanans experiencing prolonged COVID symptoms.
“Part of the problem is that there are a lot of patients that weren’t diagnosed. I worry about those kinds of patient that were never seen. We need to educate patients that there is help for them,” Nieset said.
Adding to the COVID burden, patients with moderate symptoms probably couldn’t get into the ED if they tried.
When hospitals run out of beds completely, ambulances are diverted, transfers are stopped and a triage protocol goes into effect. Even people with time sensitive trauma such as heart attacks or strokes have had difficulties finding a bed during these times.
Nieset recognized there was a need for a more organized system for long-haulers when an overwhelming number of patients started reporting symptoms months after infection.
Early on, it was assumed that it all tied back to the respiratory system, resulting in a flood of referrals to the pulmonary department, said Jason Kjono, physician’s assistant at Benefis.
Kjono remembers one week when about 50 referrals came into the department.
Though long COVID does largely affect the pulmonary realm, COVID wreaks havoc in multiple organ systems, demonstrating the need for a multi-disciplinary approach, Kjono said.
The recovery program employs pulmonologists, cardiologists, gastroenterologists, neurologists, ear, nose and throat specialists and a behavioral health specialist who all work together to create a whole body approach to treating long-haul symptoms.
“In post-COVID recovery, we look at all the factors. We take a whole body approach and treat each patient differently,” Kjono said.
When Nieset identified the need for the program, he knew that ease of access would be critical in order to serve the huge number of patients reporting prolonged symptoms. So, with the Medicare expansion to include coverage for telehealth, Nieset changed the traditional medical landscape.
“Eighty-five percent of the time the answer is through history taking…when we talked with patients, people prefer the phone. Zoom is not the future,” Nieset said.
Follow-ups to assess response to medication can also be done via phone call.
The recovery program is booked at least for the next two months serving Montanans as far as the eastern part of the state as well as patients from Washington, North Dakota, Idaho and Wyoming, according to Kjono.
Denise lives in Billings, but has only traveled once for a full day of testing at Benefis since her June intake phone call.
Before she found the program, she was preparing to move her whole life to Salt Lake City, which had the nearest COVID recovery program she could find.
Denise’s journey with COVID has been frustrating while she spent at least 10 months hearing that there was nothing the Billings Clinic team could do to help her low oxygen levels, short-term memory loss, inability to recall words, numbness in her feet and weakness on her right side.
‘IT’S BEEN A JOURNEY’
Denise loves the little things in life, like her coffee. A year and three months after testing positive, a chemical taste has replaced the rich flavors of her favorite hot beverage. It’s the same with peanut butter. Phantom smells like burning electrical and cigarette smoke are the new normal.
For Denise, COVID snuck in when life was slowly approaching overwhelming levels. Her close friend was in need of a long-term living facility when all were closed to new residents and many were hotbeds for COVID infections. She moved in with Denise temporarily.
Denise also cared for her 12-year-old son and three additional children whose home lives were unstable until a foster family could be found. She took them all under her wing while working full-time from home.
“I got a little over extended and I let my stress take over. That was all COVID needed. I thought `we’ll be fine.’ We did everything right,” Denise said. “When you get COVID you don’t realize that in a year you’re still going to be fighting it.”
Doctors in overwhelmed health systems have had little scientific evidence to guide their care when it comes to long COVID and have not developed a universal protocol for patients with symptoms like Denise’s.
Her symptoms were treated on an individual basis, but overall she saw very little improvement.
“For 10 months I heard that they couldn’t fix me,” Denise said. “”I was feeling sorry for myself and being pissed off because there was no hope.”
So far, Denise has been the sickest patient ever treated in the post-COVID program and has come the farthest in her recovery, according to Nieset.
Difficulties with word recall happen every once in a while for most people, but for Denise it was happening about 20 times a day, she said.
In March of 2021 Denise started back at her job working only four hours a day training people how to use software at media companies. She has slowly increased her working hours, only making it back to full-time in August 2021, nearly a year after contracting the disease.
She was put on temporary disability in order to keep her job.
LIKE EARLY DEMENTIA
When she told Nieset about her cognitive issues, she was referred to Lajara-Nanson, the neurologist in the program. He brings patients in for neurocognitive testing that looks at memory, ability to organize information, reaction time and ability to plan.
So far, Lajara-Nanson has seen severe attention problems and memory loss in his long COVID patients.
When Denise was tested for cognitive function she completely failed the testing, successfully completing only 1% of the scenarios.
At this point in the COVID-19 pandemic, the mechanism for the cognitive effects are unknown, according to Lajara-Nanson.
“There is no clear marker in the spinal fluid or in the blood. No inflammation in the brain,” Lajara-Nanson said.
But what is known is that the virus attaches to receptors that are present in most tissues throughout the body, which might provide an explanation as to why so many organ systems are affected.
“It’s the perfect virus,” Lajara-Nanson said.
But there has been one consistent pattern when it comes to brain fog: long COVID patients resemble people struggling with early onset dementia or attention deficit disorder.
He has prescribed traditional medications for these cognitive issues and within a few months, he’s seen great improvements in his patients. So far, he has been able to wean patients off the medication after about three months with their brain fog symptoms improved.
Insomnia is also a common problem with minimal options for treatment. Long COVID patients seem to be resistant to the typical medications used, Lajara-Nanson said.
“This is particularly a challenge for mothers who are working, going to school and taking care of their families. Many have developed secondary anxiety and depression,” Lajara-Nanson said.
The Benefis program screens for post-traumatic stress disorder (PTSD) and other mental health disorders. Dr. Stephanie Burcusa is in the recovery team, prepared to treat patients dealing with loss, grief, anxiety, prolonged stress and more.
Dealing with severe illness in isolation is incredibly mentally taxing, leaving many to struggle months later.
Today, Denise still has nightmares from her time being intubated. Little things like a commercial or a song that played while she was sedated triggers hazy memories of her eight days in the ICU, including the day they woke her up to tell her they were going to remove the tube from her throat.
She has since started seeing a counselor as she works through a new and unknown chronic illness. She is also addressing her fear of going out in public where she worries she could catch the virus again.
“Normal people don’t understand our anxiety. I’m not doing my life,” Denise said, adding that she doesn’t want to miss another year of her son’s Christmas concerts.
Denise still has her groceries delivered. She has only just started venturing out to lunch with people she feels safe with and still wears her mask at all times outside of her home.
She is frustrated that people chose not to believe in the virus while she lives with the devastating aftermath of COVID-19.
And her disappointment in Montana’s leadership is palpable.
“I get so angry at how our government is handling it, how our leadership is handling it. I voted for Gianforte, but the first thing he did with the mask mandate and made vaccination (requirements) illegal it’s disheartening for people like me.as a person who’s fought this, it is difficult,” Denise said.
Both Denise and her son are absolute believers in masks and social distancing, and her son was mortified that he could have brought the virus home from school.
SOMEONE TO BELIEVE
One of the first things Denise said about the Benefis program was finally, someone believed her.
Since she tested positive, doctors have linked her battle directly back to her diabetes, diminishing the fact that her life has forever been changed by COVID.
“They automatically blame it on the things they can see,” Denise said. “Not everything happens because I’m diabetic.”
Throughout her battle with COVID, she learned to be her own best advocate for her health care, feeling empowered by her decisions to go forward with the long COVID recovery program.
`:[I fired the Billings Clinic pulmonology department because Dr. Nieset was giving me answers that I had never heard of before,” Denise said. “He was asking me questions no one had ever asked me.”
Originally, her doctors put her on a nebulizer treatment with albuterol, a medication that works by relaxing the muscles around the airways so that they open up. But after pulmonary tests done at Benefis, it was apparent that her lungs weren’t strong enough to breathe in adequately.
A nebulizer treatment with a steroid prescribed by Nieset showed almost immediate results. Suddenly, Denise was doing laundry, emptying the dishwasher and doing one more chore before she needed a break or support from her oxygen tank, which has become an extra appendage since she was hit with COVID.
She went on ADD medication suggested by Lajara-Nanson, and now her brain fog and memory are improving.
“Within a couple weeks, it worked! I started to not have those memory lapses, I was finding those words,” Denise said.
Her general practitioner has started working closely with the Great Falls team so she can continue her care from Billings.
She is also committed to raising awareness. She’s enrolled in a Johns Hopkins study of COVID long-haulers, hoping that even if she can change one mind about COVID that she will have made a difference.
Since she started the post-COVID program, she has hope she will recover and she’s made a commitment to getting better.
“Right now I still need Dr. Nieset, over a year later,” Denise said. “But someday I will get my singing voice back. It might not be this year, but I will get it back.'”