A Kokomo woman didn’t get to celebrate Thanksgiving, her 55th birthday, Christmas, or New Year’s — in fact, she doesn’t even remember them.
Theresa Jansen still is piecing together what happened to her during two months that are essentially missing from her memory after she was hospitalized with COVID-19 in November. Jansen spent 63 days in hospitals, 35 of which were on a ventilator, and she’s still in therapy, working to regain her strength. While she said it’s been tough hearing what all she went through over those two months and how it affected her family, she needed to hear it.
“I needed to hear it because I didn’t know what happened to me at all, so it was a big blank for me. I wanted to know what happened to me,” Jansen said.
Jansen, then 54, had been healthy and had no underlying health conditions when she started feeling sick around Nov. 12. Her sister, Amy Jansen Roe, also started feeling ill. They found comfort in texting back and forth, sharing their symptoms with each other as their illnesses carried out. Roe experienced body aches and a fever, but Jansen’s symptoms soon worsened when she started having breathing issues.
Jansen got tested for COVID on Monday, Nov. 16, and she didn’t hear back about her results until Saturday, Nov. 21. That day, she received a call from a woman who was working out of Las Vegas who told her that she was positive for COVID-19. But Jansen’s labored breathing was apparent, and the woman called an ambulance for her.
Jansen was taken to Ascension St. Vincent Kokomo that day, and being admitted to the hospital was the last she remembered for a while.
Roe said it was shocking that Jansen’s health went south like it did. The sisters knew of others who also were battling COVID at the same time as them, and they all were experiencing mild symptoms. Some only lost their sense of taste and smell.
“It was like we were seeing other people, and it was affecting everyone so differently that I just felt so sad that she was having a hard time breathing,” Roe said. “But I didn’t think it was going to turn into all this. I just thought, ‘Well this stinks, and she’ll get better as time goes on.’ I never expected all this.”
Roe’s husband was a respiratory therapist at Ascension St. Vincent, and he was able to provide updates on how Jansen was doing since visitors weren't allowed. Jansen was put on oxygen immediately, and it seemed to be helping. But by Sunday night, she was on a ventilator. She had fluid filling up in her lungs, and there was talk of having to put in chest tubes. Jansen was transferred to Ascension St. Vincent Indianapolis and admitted to the ICU.
“It was like torture not being able to be there and see her and see for ourselves,” said Roe.
A waiting game
Roe became the family point person, and she received updates every morning and evening about how Jansen was doing in Indianapolis. On Nov. 24, the day Jansen was sent to Indianapolis, Roe took to Facebook to post about her sister, and she continued posting regular updates, which later served as a journal of sorts for Jansen.
“I started making Facebook posts the day she went to Indianapolis. I said, ‘Hey I don’t feel 100-percent comfortable putting all our business out there, but I feel like we need the power of prayer right now.’ So I went ahead and put that first update on it and continually made updates throughout the process.”
What ensued was a rollercoaster of emotion for the family, as with COVID patients, Roe was told, they can be doing really well and then take a turn for the worse quickly.
The 15th day Jansen was on a ventilator was a critical day. Doctors had been talking about trying to wean Jansen from the ventilator, but she developed a bacterial infection on top of the COVID pneumonia. With the state of what her lungs were already in and the fact that her body already was fighting pneumonia so hard, doctors didn’t know if her body would be able to withstand the infection on top of it.
The next concern was that her care team didn’t want to keep her on sedation for so long, so they began doing what were called “sedation vacations” where the sedation would be turned off almost completely, and Jansen would be told commands like “wiggle your toes” or “blink your eyes.” Jansen wasn’t responding. Doctors thought she might have brain damage.
“We thought, ‘Gosh, she’s fought this hard, and now what?’ So then they were saying to have a conversation about, ‘What does that look like? What do you want to do as a family if she’s never going to be herself again?’” Roe said.
The family got together and had those tough, tear-filled conversations to come up with a plan.
On Dec. 9, a “drive-in” prayer vigil was held for Jansen in the parking lot of Northview Church, and the turnout, Roe said, was heartwarming.
Further community support followed on Jansen’s 55th birthday on Dec. 18. Her family struggled not being able to celebrate it with her, so Roe posted an update on Facebook, asking Jansen’s supporters to spread love and positivity by performing a random act of kindness. Roe and her family delivered care packages to hospital staff.
Jansen’s heath again began to improve, and staff began talking once again about weaning her off of the ventilator. While Jansen's care team had offered Roe and her family chances to FaceTime with Jansen, Roe didn’t feel like she could handle it and opted to talk to her sister on speakerphone. While Jansen was sedated during those phone calls, Roe hoped she’d be able to hear her family talking to her.
It was on Dec. 21 when Roe finally felt ready to FaceTime with her sister.
“They asked a few times if we wanted to FaceTime, and I was like, ‘I don’t think I can see her laying there like that and not be able to touch her.’ It would be one thing if you’re sitting next to the person that you love, but knowing that you can’t be next to them, I was like, I don’t think any of us are ready for that,” she said.
On the 21st, Roe saw her sister for the first time in more than a month. And it was encouraging. Roe had two of her children with her on FaceTime, but she told Jansen that her other son was at the mall shopping for his girlfriend. Roe said Jansen, though she couldn’t talk, raised her eyebrows in a way that Roe knew she understood.
“That is such an aunty thing. I was like, ‘Oh, my gosh.’ She was understanding what we were saying, so that was such an awesome, awesome joy,” Roe said.
Jansen’s progress continued. She slowly began responding to commands, and breathing trials were going well. On Dec. 30, Jansen was taken off of the ventilator after 35 days.
Where am I?
Jansen remembered one day waking up in an intensive care unit. It was very dark. She couldn’t talk, and she noticed she had a tracheotomy that was put in to help with her breathing.
When she’d move her lips to say something, nothing would come out.
“I had no voice. It was terrifying not being able to ask what you needed,” said Jansen.
Jansen was moved to the progressive care unit, but she still didn’t know what had happened to her. She was told she’d been on a ventilator for a long time. She had what they called “COVID brain” where she couldn’t remember much.
She remembered at one point trying to call her boyfriend, Rick Phelps, but she couldn’t think of his name. As she began to come to more and regain her voice, she began talking to her family and friends on the phone. She remembered one friend asked her how Phelps was, and Jansen said he was fine. Finally, when the third person asked that same question, she asked why everyone was wondering how Phelps was doing.
She found out why. Soon after she was admitted to the hospital with COVID, Phelps was too. He was a ventilator for just three days, but he was having a rough time recovering in rehab.
Roe said the family didn’t tell her right away as they didn’t want to stress her out after everything she’d already been through, and they also didn’t know where she was cognitively.
Jansen said it was a whirlwind trying to make sense of the lost time and everything that had happened. At first, she was scared to even ask those questions.
“I had so many questions, and I was afraid to ask them because I didn’t know what the answer was,” she said. “I didn’t even know what a ventilator was. I didn’t know if it was a big machine, and I found out it’s a little box that sits beside you. I didn’t know if they were moving me around in it. Was it a big box they were moving me around in, or did they just leave me in it?”
She also learned that she was proned every 12 hours where she was left on her stomach for 16 hours a day. She was on several drugs, including a paralytic, and she had a gastrostomy tube that she was fed through.
Road to recovery
On Jan. 22, 63 days after being admitted to the hospital for COVID, Jansen went home, but she still had a long road to recovery. She’s still suffering from muscle weakness, especially in her hands, and she has numbness in one leg. She continues to undergo physical therapy, occupational therapy, and speech therapy.
As the days go on, Jansen continues to learn more and more about what happened during the time she was battle for her life. Hearing about the outpouring of support that came from Roe’s Facebook posts, she said, was humbling.
“I can’t imagine that many people were concerned enough about me to pray like they did, so it’s just really humbling. It’s amazing that that many people would care,” Jansen said.
She also realized how tough her hospitalization was on her family. That was their battle, she said, and she’s just now beginning hers.
“The first part of the fight, my family did the work. They had to worry and fight and pray for me, and I didn’t know anything about it. But now this time is for me to fight, and this is my fight now to get better and to do the physical therapy and occupational therapy and speech therapy and keep my mind strong,” she said. “So that first part was their fight, and this is my fight. And I’m determined.”