Deb Hoffman told her family after she was discharged from the hospital on May 27, 2020, that she didn’t want to discuss her bout with COVID-19. She didn’t want to hear television reports about the pandemic, she just couldn’t bear it.

The survivor’s guilt she felt after surviving COVID-19, when so many others had not, overwhelmed her.

“When you have all this time to lay around, you start thinking about everything going on in life,” Hoffman said. “Why me? Why did I survive?”

Hoffman spent 49 days fighting for her life in hospitals. While she survived, her battle was far from over. She felt tremendous guilt for many months after being released from the hospital.

Almost a year later, she is talking about it so she can help others facing similar challenges. Looking back, she said, “It goes back to that saying: ‘You never know how strong you are until that’s the only choice you have.’”

Life during a pandemic, and the fear of COVID-19

During 45 years as a nurse, Hoffman has seen a lot. She was working as a triage phone nurse at UCHealth Family Medicine in Greeley when the pandemic struck Colorado last spring. The fear and devastation that COVID-19 unleashed on her community was nothing like she had ever seen before. A month into the outbreak in Colorado, UCHealth’s 12 hospitals were caring for more than 200 hospitalized COVID-19 patients, a number that grew daily.

Hoffman, who suffers from asthma and chronic autoimmune disorders Lupus and Sjogren’s syndrome, was scared too. On Friday, April 3, 2020, she was told not to come to work because she was immune-compromised and high risk; she’d be paid for the week until workflows could be worked out.

A few days later, she began to feel unusually winded while at her Evans, Colorado home.

“I thought maybe it was my asthma, which I knew was weird because it had been controlled over the years,” Hoffman said.

Her nephew, Justin Eidem, brought her a new inhaler, but it didn’t help. The next day, she got a COVID-19 test but had to wait 72 hours for results.

By that evening, she felt feverish. Her temperature reached 103.8 degrees and her oxygen level dropped to 78. Dizzy, she sat on her couch gasping for air and called her sister, Penny Eidem, who lives in Greeley. Penny called an ambulance.

Hoffman grabbed her advance directives paperwork and wrote in the margin: If this is COVID, if needed, I want to be intubated. “I’m too young not to fight,” she said.

She unlocked her door and waited.

When COVID-19 becomes real

At UCHealth Greeley Hospital Emergency Room, doctors confirmed COVID-19 and worked to stabilize the 63-year-old nurse. Three days after arriving, Hoffman’s breathing had grown progressively worse. She needed to be intubated and placed on a ventilator. Her pulmonologist asked Hoffman about her end-of-life wishes.

“That’s when it hit me. ‘OK, now it’s fight or flight, and I’m going to fight,’” Hoffman said. “I’m going to fight and give it everything I have, and I hope that is enough.”  That was the last thing she remembers.

With ICU beds full at Greeley, she was transferred to UCHealth Medical Center of the Rockies in Loveland.

The next 40-plus days were a blur. She recalls seeing health care workers in full protective gear and having hallucinations. For her family, it was 49 days of fear, uncertainty and prayers.

Connecting two worlds: Fighting a pandemic both inside and outside the hospital

At UCHealth hospitals, nurses were moved from their regular duties to the front line of the COVID battle. Robin Johnson, an MCR cardiac nurse who transitioned to a COVID-19 patient liaison during the first wave of the pandemic, was there to help families stay informed and connected with their loved ones.

“It was heartbreaking and emotional,” Johnson said. “We supported each other every day and because families couldn’t come in to see their brother, sister, mom, or dad, I was their connection.”

Johnson spent hours on the phone with families, talking to each patient’s loved ones two to three times a day. She’d start by educating families on the coronavirus and the necessity of quarantine and isolation – as hard as it was. She kept families abreast on their loved ones’ treatments: what was working and what wasn’t.

“Deb got pretty sick,” Johnson said. “But I tried to give her family something positive about Deb every day. It’s important for them to hear.”

Johnson charted everything in a patient diary she kept for Hoffman. Exclamation marks highlighted each “positive” event for the comatose Hoffman. Good days were measured in the amount of time Hoffman spent on her back and more time meant her lungs were beginning to heal. Johnson let the family know when Hoffman’s fever lessened and when she received blood pressure medication, a signal she was weaning off the ventilator.

“She was simply a lifesaver for the family,” Penny said of Johnson. “We hung on every single word she uttered every day. She gave us hope while helping us to manage our expectations.”

Johnson shared each time Hoffman started to move a finger, an arm, or a leg – signs that brought hope to the family. Soon, Johnson began sharing messages from the family with Hoffman. For example, her nieces and nephew asked the nurses to whisper in her ear, “Auntie, keep fighting because we love you and we need you.”

“Penny would tell me things to tell Deb,” Johnson said. “In the beginning, Deb wasn’t understanding a lot because of the medications, but as she became more coherent, she’d get a smile on her face.”

“It’s so important because those people know what you were like before all of this,” Hoffman said. Johnson and the other nurses would tell Hoffman how much her family loved her while they brushed her hair — something her sister told Johnson Hoffman would enjoy and would calm her.

The COVID-19 nightmares

Only hours after Hoffman was off the ventilator, Johnson set up a Zoom call with the family. Hoffman still couldn’t hold her head up well or her eyes open.

“Robin (Johnson) tried to prepare us — that Deb was going to be very confused, maybe even combative because of the medications she had been on,” Penny said. “But I wasn’t prepared for that confusion. As soon as she heard my voice she started to whisper to me. … It took us 15 minutes to figure out what she was saying: ‘Medical Center of the Rockies.’ She was trying to tell us where she was because she believed we didn’t know.”

Unknown to her family, Hoffman had been having horrifying hallucinations while intubated, including being on an airplane, kidnapped by ruthless people.

“You don’t realize what they may have been through, and until we got through to her, she wasn’t trustful,” Penny said of her sister. “She was convinced she’d been taken and scary things happened.”

Penny reassured her sister that she was safe; that her family had been talking with her nurses and doctors, and she needed to trust their care. Those hallucinations would haunt her for months, but Hoffman knew she needed to focus her energy on getting her physical strength back after being sick for so long.

From the COVID ICU toward recovery

On May 8, 2020, Hoffman was well enough to transfer to inpatient rehab at UCHealth Poudre Valley Hospital in Fort Collins.

“Her first day on the rehab unit, she was weak,” said Megan O’Brien, a PVH physical therapist. “I remember her goal was to walk to her door that day, and she wasn’t sure she could do it.”

Hoffman did, though, and each day thereafter she made more gains.

Despite her progress, Hoffman remained on oxygen because her lungs had not fully recovered. She suffered from acute muscle myopathy, and she had “COVID toes,” large blood blisters on the big toes caused by lack of circulation. She could not wear shoes.  Weakened by so many days in the hospital, Hoffman didn’t have an appetite; food had no taste and left her throat sore.

“Anyone in the hospital for as long as someone like Deb, their reality changes,” O’Brien said. “We see confusion related to ICU stays and medication. They are foggy and not themselves. … But Deb is a hard worker, and her goal was to get back to work.”

After nearly three weeks at PVH, Hoffman went home — 49 days after the ambulance had taken her away. Health care workers lined the hallway and applauded as Hoffman’s wheelchair passed by. “Eye of the Tiger” by Survivor played in the background.

At home, new battles began.

“We think about people discharged from the hospital or rehab and being better, but that’s not the case,” O’Brien said. “Just because they’ve walked out the door doesn’t mean they are back to normal. It’s a long road, and they need support throughout that time — the weeks and months to come. Encouragement can’t stop when they get home — that’s when they need it most.”

Luckily, Hoffman had support when she returned home. Her brothers and sisters had all the medical equipment set up she needed. Her nephew spent nights with her while Penny stopped in during the evenings and weekends. For two weeks, her long-time friend – a rehabilitation nurse from North Dakota – came to stay and helped Hoffman continue rehabilitation.

COVID-19 had left Hoffman with two large hematomas, a collection of blood outside the blood vessels. She had one the size of a football on her side, and another under her breast. It took weeks for them to be absorbed.

“I was so glad to be alive … I didn’t want to complain because God had done so much already,” Hoffman said.

Six days after she left the hospital, Hoffman got shingles, most likely brought on by the stress of her recovery. Then her hair started to fall out, a common COVID-19 side effect caused by medications used to heal patients. Hoffman had poor circulation, which often made her feel cold, and she still needed oxygen.

“It’s all hard on the body… but I had an advantage because I’m a nurse and knew how to take care of myself,” Hoffman said. “You have to listen to your body. I didn’t think I was a COVID ‘long-hauler,’ but it did take longer for me to recover.”

However, recovery is not only a challenge physically, it’s also challenging mentally.

Seeking mental health to deal with COVID-19 aftermath

While Hoffman was in the hospital, her required CPR certification lapsed and she had difficulty getting open enrollment for insurance benefits completed while in rehab. Life’s ‘to-dos’ piled up, but what really bothered Hoffman was the question of why she survived. In addition, flashbacks of her hallucinations reminded her of her experience.

On July 7, 2020, Hoffman sought professional help and started counseling therapy by tapping into her UCHealth benefits.

“I needed to get past and accept the reason I was here,” Hoffman said. “My therapist was wonderful.”

Hoffman began to talk about her experience. She wrote down her feelings, and when she was ready, shared them with her family.

“The first line of treatment to address this stress is to talk,” said Rachel Slick, a behavioral health therapist at UCHealth.

Slick didn’t provide care for Hoffman, but she helps others dealing with similar issues at UCHealth Family and Internal Medicine clinics in Greeley.

“This allows you to verbally process your experience so it takes up less space in your head and your heart. Expressing yourself and saying your fears out loud can slowly desensitize you to them and promote a restored sense of confidence.”

Once Hoffman was able to talk to her family about it, they shared with her what she couldn’t recall.

“She has this big dark hole in her life that she can’t remember,” Penny said.

Penny had written a group text message each evening to family and friends updating them on Hoffman’s condition. Her brother would then message Hoffman’s phone each morning with an update and words of loving encouragement, even though he knew she wouldn’t see them until much later. The family also recorded their Zoom calls. All these they shared with Hoffman once she was ready.

“For her to start hearing, to understand, and to be able to read those texts … to be a nurse and see the setting and the medical jargon, was super helpful,” Penny said. “I could see a change in her once she was really able to see it all.”

Returning to life and work after fighting COVID-19

Once Hoffman worked through her fears — and got her certifications back in order — she returned to work, half days at first to start and full time by the end of August.

It was scary to walk through the door, she admitted.

“I knew I was being safe, but what about everyone else?” she wondered.

Fear of being infected again with COVID-19, although unlikely, was real. As a health care worker, Hoffman has now received both doses of the COVID-19 vaccine, but she is still guarded in her activities. She only ventures out for work, follow-up appointments, including those with her primary care physician, Dr. Anna Wilkins, who also works in Hoffman’s office. She goes to her sister’s on the weekends to spend time with their beloved Huskies, Bella and Jazzie.

“Deb is hanging in there, but COVID-19 greatly affected her physical stamina,” Wilkins said. “If she doesn’t get a parking spot near the entrance (for work), it’s hard for her to walk that far. So our group will make sure she has a ride back to her car.”

As Hoffman’s provider, Wilkins is a resource for the long term.

“Patients can come to (primary care providers) with any concerns and we can at least get them pointed in the right direction whether that be physical therapy, behavioral health services, or with oxygen needs or sleep issues,” Wilkins said. “We know our patients well. We know them before and after these experiences. We are aware of the fact they may be going through depression, even if they can’t put their finger on what’s wrong. We are here for them. They can lean on their primary care doctor.”

Hoffman is now back to work every day. She still hasn’t watched the news since she’s returned home, and she still struggles and tears up when she talks about her experience fighting COVID-19. And she still misses her “old” life where she’d go shopping and hang out with her friends and family.

But until everyone, at least in her family, is vaccinated, Hoffman will continue to stay home and stay vigilant with mask-wearing, washing her hands and physical distancing.

And she shared advice from what she’d learned: “Try to stay positive, keep busy while your body is healing and consider a counselor to work through your journey.

“You are not alone as there are many people involved in your journey and can help. You may not be able to see that your body is healing on a daily basis, but it is happening.”

Her sister Penny added, “as family members, please be patient and mostly just be supportive; seek answers and help for your loved one. Remember, they are counting on you to be their advocate in places they cannot or are not ready to be.”

When Hoffman feels like life is too much, she remembers what her doctor had told her sister one day while she was still in the hospital.

“Deb is remarkable,” he told Penny, which Penny wrote down and later shared with her sister.

“I have to live up to that,” Hoffman said. “And that gives me drive.”