It has been over two years since Barry Guyer came down with COVID-19.
“(I) was just in the harvest field. I just feel terrible,” said Guyer, who runs a farm near Goodland in northwest Kansas. “I came home that night and said, ‘I think I have these things.
Guyer was hospitalized for a week. It will be about a month before he returns to the farm. It took nine months for his sense of taste and smell to return. He is still waiting for his stamina to return.
“Today I’m alone climbing grain bins, moving augers and stuff,” he said. “It just takes your breath away, and then you just have to stop and wait a bit to come back to yourself.”
Long-term COVID, often confusing effects that plague the body for months or years after acute symptoms have subsided, is likely to plague about 200,000 people in Kansas. But Kansas is one of only two states that doesn’t have a medical center that specializes in treating the condition.
This leaves people like Guyer hours away from the experts with experience in dealing with the foggy head and breathing problems that remain after the easing of COVID. And even people who live near Kansas City and places in neighboring states with specialist teams can wait months for an appointment.
Clinics were formed throughout the country, usually at hospitals. They combine a wide range of knowledge to treat long-term COVID. But they are clustered, as expected, in urban areas. And while almost every state has at least one, Kansas and South Dakota don’t.
The Right Specialists
While hospitals and health centers may have pulmonologists or cardiologists to treat long-term symptoms of COVID, dedicated centers dedicated to treating it can provide patients with more comprehensive care.
“A specialized center can get a comprehensive view of a patient from 50,000 feet,” said Dr. William Michael Broad, who has worked at the longstanding COVID clinic at Dell Medical School in Texas. “Then you are not a wandering doctor after doctor.
Survivor Corps, an organization that is trying to help people with long-term COVID, says there are about 240 long-term COVID centers scattered around the country. Most of them are listed as long-term recovery centers.
“These places are aiming to be sort of a one-stop-shop where you can go and get treated by multiple specialists,” Survivor Corps spokeswoman Katherine Burke said.
Long trips, longer waits
The waiting time can stretch for months. However, Broad said people seem willing to wait and travel for specialized help.
“We have patients coming in from the (US-Mexico) border who have been driving for five hours to visit us,” Broad said. “I think eight hours is our record and shows that people are looking for this help and are willing to take the time to get the help they need.”
For someone like Guyer, the nearest general clinic would be in Denver, about three hours away. Burke said local clinics and hospitals generally cannot afford to set up their own long-term COVID clinics.
“People in more rural and less wealthy areas find it difficult to access long-term COVID treatment simply because… medical clinics and health centers around them may simply not have the funding or staff to devote the time and money to long-term treatment. COVID clinics,” Burke said.
She would like more federal funding to help more rural hospitals offer long-term COVID clinics.
“The intervention of the federal government and the establishment of these clinics and centers in more rural areas,” Burke said, “is really critical.”
But even in urban areas with long COVID clinics, waiting times can be maddening.
Kansas had a virtual long-term COVID clinic in the midst of the pandemic. The University of Kansas Health System in Kansas City, Kansas opened an online clinic for existing KU patients in early 2021 and then opened it to the public a few months later.
Debbie Hamilton was referred to the long-term COVID clinic at KU but was told she would have to wait three months after she had COVID to make an appointment.
“I had such high expectations and… I just felt like I was literally being beaten up every time I was told this,” she said.
Hamilton contracted COVID in 2021 and never recovered. She described her cognitive problems, which made it difficult for her to drive, shower, and be in a room with other people, including her own family. Dealing with her symptoms and having to constantly advocate for her treatment took a psychological toll.
“It’s terrible,” she said. “Feeling of failure; feeling like you can’t function; feeling… not even smart anymore. The feeling that the doctors just think you’re crazy.
Despite being a nurse, Hamilton struggled to navigate through doctors and appointments. One doctor told her they “didn’t do COVID.”
“Why such an option?” Hamilton said. “These patients have a lot more things. This causes autoimmune problems. This causes heart problems. It causes breathing problems.”
It took Hamilton about a year to recover enough to return to work. She believes the clinic is also a way to simply acknowledge that prolonged COVID is real and give people a chance to feel validated.
“There should be a clinic because I think it’s a lot more common than anyone thinks,” Hamilton said.
While Kansas doesn’t have long COVID clinics, Missouri has five. Two in Kansas City, two in St. Louis and one in Columbia.
Dr. Zachary Holliday works at the Columbia Health University Missouri Clinic. In one room, a bicycle and a treadmill are placed next to each other and next to a machine that patients blow into to check their breathing volume.
“It measures lung function and it comes down to how much air a person can breathe in and out and how fast,” he said.
The clinic is only open one Thursday a month. This limits the number of people he can heal.
“We try to do our best to get people involved as quickly as possible,” Holliday said. “And if they can’t see us in the long COVID clinic, what we’ve been trying to do is actually give them access to a lung clinic.”
He said the demand could be even higher because many people don’t even know about the clinic.
Guyer, a farmer in northwest Kansas with a long history of COVID, only recently found out that there are clinics that have specialists to treat his problems. He said he would consider going to Denver – the nearest long COVID clinic – if he could plan it with other appointments. At the same time, he came to terms with his failing health.
“I don’t think that will ever change,” Guyer said. “I think it’s just going to become part of the life that I have to deal with now.”
Samantha Horton reports on the state of health of the Kansas News Service. You can follow her on Twitter @SamHorton5.
The Kansas News Service is a collaboration between KCUR, Kansas Public Radio, KMUW, and High Plains Public Radio dedicated to health, social determinants of health, and their relationship to public policy.
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