She sits in her sunroom looking out over the cornfield browning in the early fall on a cloudy day with her dogs sitting nearby. She doesn’t take days like this for granted. Sue Slauson spent 66 days at UnityPoint Health-Meriter, some of them in the ICU and on a ventilator after being diagnosed with COVID-19 at the end of May.
“This is a nice view, it’s really nice when the corn is gone,” Slauson, a retired teacher of the Lake Mills Area School District, said last week.
At the beginning of the pandemic Slauson and her husband Maury Martin were in Hawaii, a typical vacation spot for them.
“We were just beginning to hear about it,” she said. She noticed a lot of Asian people wearing masks when they went to the airport and wondered if they should be concerned.
When they came home the pandemic was really starting to pick up.
“We were super careful,” she said. “We didn’t go out and when we did go shopping for food we would go really early and we wore masks.”
She doesn’t know how her, and her husband got the virus.
Slauson’s friend and Martin had COVID at the same time as her, but they don’t know how they were infected exactly.
The couple started having symptoms the weekend after Memorial Day when they got together finally with their families for an outdoor event, thankfully none of those in attendance got the virus.
“We were keeping our distance,” she said. “We planned this big get together and we had our two mobile homes at Woodland Beach and we rented this large cabin so that they could cook, and it had big outside tables and we could all be outside.”
They noticed the coughing first.
“I just thought it was allergies,” she said.
On Sunday night Martin got really tired and wanted to lay down. On Monday they started feeling uncomfortable and lost their sense of taste and smell by that night.
“On Tuesday we were spiking fevers and we called to have a test at Fort Hospital and we were both swabbed.”
By Wednesday Slauson had a high fever and her blood saturation went down. She went back to the ER and they sent her back home after she stabilized.
By the next Monday she was spiking fevers up to 104 and her blood saturation was in the low 80s.
“I was like a zombie,” she said. “Maury had it, but it wasn’t as bad.”
On June 8 she went back to the ER, this time to UW near Sun Prairie. They tested her again and she was sent to Meriter. The virus had settled into her lungs. She had pneumonia.
“They took me to the floor for COVID patients and I didn’t even last three hours there, and they took me to ICU.”
Slauson felt adamant she didn’t want to be on a ventilator.
“The doctor came in with forces behind him, another doctor and nurses, and he said, ‘You have to decide right now.’”
They had to put it in between her fevers spiking.
“I was taking so much oxygen. I was at 90% oxygen,” she said.
“He said you have to decide right now whether you’ll go on a ventilator or the other decision is how we can let you die comfortably.”
At that point she let them put it in.
“I thought I would sleep through it and I would be off of it. It’s not like that at all. It’s horrible, absolutely horrible.”
She was aware and could answer questions with a pen and paper, she said.
“They even had me doing Facetime with Maury and my son.”
She said it felt very surreal to be on the ventilator.”
“I can understand why people want to pull it out. It’s very uncomfortable. I had a very sore throat and you’re so drugged and you can’t talk.”
While on the ventilator she said she was having some hallucinations.
“I thought they had gone through my ribs to clear out my lungs. They didn’t do that.”
Slauson was on the ventilator for six days, but said it felt like a month.
After the ventilator came out Slauson says she thought she would be able to get her strength back and go home.
She went back to a general floor and was there for one night and went back to the ICU.
“I was there for weeks.”
The goal was to get her oxygen level down, so she could go home.
Slauson says she pushed herself to get there.
The doctors and nurses at the hospital told her their patients don’t normally push themselves like that.
“I asked what they do, and they said they lay in bed and cry. What good is that going to do? You have to work at it,” she said with determination.
She worked with physical therapy and occupational therapy, doing more than what they asked.
“I was doing more than what they were teaching me to do.”
Perhaps one of the worst parts of her hospital experience was being alone.
“You could have no visitors, not my husband, nobody, even though he already had COVID.”
For her family the only glimpse of Slauson while she was in the hospital was by Facetime.
“I can’t imagine what it would have been like before that.”
The outpouring of love she has seen from friends has really affected her.
“They’ve really been wonderful,” she said through tears.
She tried to keep friends updated on Facebook.
“I had people from Florida to Alaska, East Coast to Hawaii and everywhere in between that were trying to contact me.”
It was a struggle for her to get down to 10 liters of oxygen, which was what she needed to do to go home. There was a possibility she could have gone to a rehab facility, but she was on too much oxygen to go there as well.
“They thought I would do better at home.”
A friend of the couple gave them an electric wheelchair to help Slauson get around her home, which she was using up until a few weeks ago, now she just uses it to go outside.
“That was the only way I could get around the house. I couldn’t walk it.”
She’s come a long way, but the journey isn’t over. Right now, she is on six liters of oxygen during the day and there is still a lot of inflammation in her lungs.
“I have to go in for a breathing test and the pulmonary doctor said we will enjoy what you are doing as well as you’re doing it, but we will also talk about, not that we’re going there, but we’ll talk about a lung transplant, because there is damage that will not be able to be fixed.”
Slauson is hoping to eventually get to the point where she can be off of oxygen.
There are a lot of misconceptions about the recovery from COVID-19, says UW Health’s chief quality officer, Dr. Jeff Pothof, an emergency medicine physician.
“Either you have COVID or you are recovered, well recovery isn’t an end point, it’s a journey,” he says. “What we’re seeing with COVID, that isn’t typical of other viruses like influenza, there are these lingering symptoms that go on for months.”
He said patients who’ve had COVID early on in the pandemic are still dealing with lingering symptoms.
“It seems to be the more severe your battle with COVID-19 is, the more likely and more pronounced these lingering symptoms are. So much so, people started studying them.”
Patients continue to report having chest tightness, saying they can’t breathe like they used to, and they report brain fog or not being as clear minded as they would like to be, significant fatigue and persistent muscle pain.
Researchers found some startling facts, Pothof said, after looking at imaging of the lungs, they saw a pattern in the lungs consistent with scaring that in other conditions is often permanent, as Slauson described.
“You could develop scaring in the lungs that doesn’t reverse itself and you may not have the ability to exert yourself or do the things you did pre-COVID because your lungs don’t function as well as they used to,” he said.
Another study looked at people who are recovering from COVID-19, who no longer have the virus in their system, but they have persistent inflammation of their heart tissue, called myocarditis.
“Inflamed heart muscle doesn’t work as well as normal heart muscle. It reduces your ability to exert yourself and do the things you did before,” Pothof said. “We have people for months now have had this persistent inflammation in the heart and we don’t know if it’s going to go away or not.”
He said one of the most disconcerting things for patients is not only do they have to battle COVID-19, but they have to deal with the lingering effects on their body.
A constant cough and her 50-foot oxygen line to her concentrator in the house keep her on a pretty tight leash, as does her energy level, but she did get out to the patio to clean up the flower gardens last week, which felt like a big accomplishment.
For Maury the experience of having his wife in the hospital with COVID has been very stressful.
“I think the experience is worse than losing a spouse, which I have,” he said. Martin was his first wife’ caregiver. She had COPD and was on oxygen.
“I’m in good hands,” Slauson said. “I hate to have him go through that again.”
“When your spouse passes you at least have closure. This went on all summer,” Martin said.
He did his best to stay busy while Slauson was in the hospital by exercising, doing yard work and taking care of the house.
Slauson had no underlying conditions before she caught the virus.
“I was very, very healthy. I thought, well, OK, so we get it and get through it and then we are immune. It’ll be OK. I wasn’t expecting to be in this position.”
Her doctor told her she was one of the worst cases they had who lived through COVID.
“I felt mad, like why did I get it, when I was being so careful,” Slauson said.
“I don’t feel like I want to blame anyone for it,” Martin commented. “It’s out there and you don’t know how your body is going to react if you get it.”
The couple asks everyone to do their part and wear a mask and socially distance to protect themselves and others.
Locally a coalition of over a dozen community groups has come together to keep COVID-19 out of Lake Mills, called Keep COVID out. The group is asking for the entire Lake Mills community to commit to the Three Ws: watch your distance, wash your hands, and wear a face covering.
“Keeping our schools open is best for kids and we are all about kids,” said Dave Wendt, of the Lake Mills Optimists. “We need to make sure that our staff and students are safe in order to keep schools open,” added Sandy Whisler, Citizen Advocates for Public Education (CAPE). Police Chief Mick Selck, President of Lake Mills Rotary said, “As members of a community it is incumbent on all of us to work together to keep COVID out of our schools. The more precautions we all take, the slower COVID spreads in our community and thus our schools.”
Lake Mills schools could become a hub for transmission if the community isn’t careful, the group stressed.
“We all want to be out and about and normal, but we can’t be,” Slauson said. “Everything they are saying as far as the science goes people need to listen and nobody wants to.”
Pothof stressed, “People need to dig deep and really come together and say the only way we get back to normal and beat this pandemic, until we have a vaccine or some other miracle treatment, is we have to socially distance and physically distance and we have to wear masks. We have to do those things because if we don’t this only gets worse, it doesn’t get better. There is no upside right now that is worth further propagation of this disease, more people getting sick, more people having their life changed forever. We need to do this.”
“In our country we are so used to our freedoms and expect our freedoms we are not willing to give them up for the good of others,” Slauson said.
Though her COVID journey isn’t over, she’s keeping a positive attitude about her prognosis.
“You just have to get through it and laugh whenever you can.”