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‘You are not crazy, you are not alone’

Long-hauler COVID survivor shares story

of a long and terrifying journey that would take her in and out of emergency rooms, to multiple doctors and specialists. It was the day her life changed forever.

Hayes and husband Zeb share six children: Jack, Billy, Daniel (“Hammer”), Jillian, Sam and Silas. Zeb and two kids also tested positive, while two kids tested negative. The youngest two were not tested, but had the same symptoms as the others. Their family lived in rural Ellsworth at the time, and their house layout wasn’t conducive to quarantining from each other. Hayes admits she was shocked when she tested positive. A year ago, not as much was known about the virus, so precautionary measures differed from what you might do today.

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Tiffany Hayes, pictured with husband Zeb and children Jack, Billy, Daniel, Jillian, Silas and Sam, has been through the wringer the past year. She hopes by sharing her story about Long-Hauler COVID Syndrome, people with similar symptoms and experiences will know they’re not alone. Photo courtesy of Tiffany Hayes COVID

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The kids showered immediately upon returning home from school, where they wore masks. They didn’t venture into stores for months, instead choosing to order groceries for pick-up. They steered away from large gatherings and stayed home. However, she and Zeb worked and the kids attended school.

After their positive tests, the couple had one or two nights where they had a difficult time breathing, enough so that they worried one might have to go to the hospital, leaving the other with six children to care for. Hayes said she and Zeb felt feverish and fatigued, with a severe headache and no sense of taste or smell. The kids had fevers, but seemed to fare better.

After 14 days quarantined with six children and her husband, Hayes was anxious to get back to work, to get back to “normal.” It wasn’t to be.

“I think I just didn’t notice at first, how I was feeling, because I was so glad to be back in the real world,” Hayes said.

At first, the changes were subtle. Two to three weeks after returning to work, Hayes realized she was listening to her patients, but she wasn’t truly hearing them, or processing what they were saying. She had a hard time finding words when speaking. She could describe an object, for example, but not remember the actual word. It’s like she was in a perpetual fog.

“You know how sometimes when you’re driving along, and all of a sudden you’re like ‘Whoa!’ and you come out of la-la land?” she asked. “I was having more frequent ‘Whoa’ moments throughout the day. It was almost like I’d pass out or fall asleep.”

Hayes has always considered herself an upbeat person, a glass half-full optimist. But her mood changed, and she became more “gloom and doom,” more negative. She was confused. Why was this happening?

Her primary physician referred her to a neurologist for possible narcolepsy, sleep-deprivation or Chronic Fatigue Syndrome. The neurologist dispelled all those possibilities, as well as the fairly new (then) theory of Post-COVID Syndrome.

“He said, nope, the infection would’ve had to have been really bad, you would’ve had to have been hospitalized for that to be a possibility,” Hayes said.

When all of her test results came back normal, the neurologist changed his mind and acquiesced. However, he said her Post-COVID Syndrome was a “mild case” and urged her to give her body time to heal. This was in March 2021.

In April, Hayes began to feel better, more like her old self. Her employer encouraged employees to get the COVID vaccine, since they worked with vulnerable seniors. Hayes admits she was nervous to get it because she was already “feeling crappy” and her head was clearing, but she received the Moderna vaccine, followed by the second dose in May. For a week, all was well.

What’s happening to me?

Seven days later, she sat down on the kitchen floor with her 2-year-old son. She felt odd and her husband noticed. She was light-headed, but couldn’t describe what was wrong. The next day she drove her son to school, but after she dropped him off, her heart started racing.

“I could feel my pulse in my whole body,” Hayes said. “I couldn’t breathe. My hands were numb and tingly.”

She pulled over and called 911. An ambulance arrived and took her to Western Wisconsin Health, where they decided she was having a panic attack/anxiety. They gave her Atavan and asked her to wear a heart monitor for a week. She’d never had anxiety before. This was new and frightening. She wasn’t convinced it was anxiety, but followed the doctor’s orders. She even went to work the next day, on May 26.

On May 27, she had to pull over at the Hammond Park & Ride off I-94 and call her mom. It was a replay of the previous day’s events. Her mom whisked her to Hudson Hospital’s emergency room, where she had a gamut of Xrays, blood work, an EKG. Everything came back normal and Atavan seemed effective in calming her heart rate. Maybe everything would be OK. She prayed for it to be so.

She went to work on May 28, but another episode occurred. Her oxygen levels dropped to 85%. Her father brought her back to Hudson ER, where they told her she was having a panic attack. All her tests came back normal. They prescribed her an antianxiety medication.

The next day was her son’s birthday and she spent the day with Zeb and her parents. Hayes teared up and struggled to speak as she described the terror at having multiple instances of heart racing, numb limbs and fog that day. Her oxygen levels dropped to 70%. She was trying to make it all stop; she was tired of emergency rooms, the disbelief of doctors, the lack of answers. When would it end?

On May 30 she went to Regions Hospital in St. Paul where she underwent an echocardiogram and a walking test. Her heart rate would go up, but her oxygen levels would drop. After rounds of tests, she was left again without concrete answers.

By June 1 she was bedridden. Zeb worked swing shift, so her parents took leaves from their jobs and took care of her and the kids. She needed them, but she felt shame.

“I couldn’t cook, I couldn’t get dressed,” Hayes said. “I had to sit on a folding chair to take a shower.”

At 7 p.m. that night, she needed help to use the bathroom.

“I couldn’t feel my hands and I looked in the mirror and I was white,” Hayes said, her voice cracking.

She doesn’t even remember who called 911, but when an ambulance arrived, her hands had formed into claws. She was on the couch, but a numbing sensation had taken over her body. She was in the fetal position with tingling throughout. She couldn’t see; her vision was white. She couldn’t talk. She knew she was dying. It was the end.

“All I could do was keep praying,” she said. “’God, I’m not ready.’ I could still hear. Zeb was trying to help me breathe. My 2-year-old was trying to help. My mouth was stuck in a circle shape.”

Hayes couldn’t fight her muscles contractions, though they eased up a bit by the time paramedics arrived. She fought back tears as she recalled how the paramedic told her “You’re doing this to yourself,” and ordered her to walk to the ambulance. Her legs buckled beneath her, she said, so the he picked her up and threw her over his shoulder like a sack of potatoes. As she was bouncing over his shoulder, she mustered enough strength to look up and saw Zeb and their son standing there. That was the first time she questioned, am I in fact doing this to myself?

“They labeled me as having anxiety and I was hoping and praying there was a doctor who would listen,” Hayes said of her ambulance ride to an ER. “I knew anxiety was presenting itself, but I knew there was something deeper, something causing the anxiety. I had just spent two weeks feeling like I wouldn’t wake up in the morning.”

Once she arrived at the hospital, she poured her heart out to the nurse on duty, who actively listened and didn’t automatically dismiss her, she said.

“She was actually the person who changed my whole outlook on everything,” Hayes said. “She was very concerned and cared.”

Pericarditis

Hayes was referred to a cardiologist after an MRI determined she’d had no seizure activity. The cardiologist at Woodbury Allina, named Dr. Ray and in Hayes’ eyes, an angel, diagnosed her with pericarditis, which is swelling and irritation of the outer lining of the heart. It can cause chest pain, fatigue, weakness, low-grade fevers, pounding or racing heart palpitations, shortness of breath – all of which Hayes had experienced.

The anxiety and depression, which Hayes now believes she had and still lives with, was due to battling undiagnosed symptoms and going unbelieved for so long, she said.

Dr. Ray confirmed Hayes had Post COVID Syndrome prior to receiving the vaccine.

“But the weird thing is, when you get an infection (like the pericarditis) or health condition not related to COVID, the COVID symptoms can reactivate,” Hayes said. “It was reactivated by the pericarditis.”

To this day, one year after her COVID diagnosis, she experiences shortness of breath, impaired vision in her left eye, chest pain, issues with her blood sugar dropping suddenly, terrible acid reflux. She has come to terms with having anxiety, though she believes it’s directly related to the undiagnosed pericarditis.

“When I’m tired, I get dark auras floating in my left eye or bars of no vision,” Hayes said. “Sometimes the vision isn’t even there. It’s all messed up but I’m learning to compensate. When I’m woozy, I drink juice or eat something sugary.”

She has seen Dr. Ray twice since her initial pericarditis diagnosis, and luckily, she received no damage to her heart. The sad truth is recovering from it and Post COVID Syndrome will just take time, Hayes said.

“When your loved ones are told it’s anxiety and depression, when you’re labeled, of course you look crazy,” Hayes said. “You start to convince yourself that you’re crazy. You don’t know why you have symptoms, how long you will have them, when you can return to a normal life.”

Acceptance

Hayes never knows how she will feel from one day to the next. She describes it as “this higher power.”

“It’s like someone puts these symptoms in a hat and picks out a handful and that’s what you will have today,” Hayes said.

Sometimes her hands still go numb or she feels winded, though her oxygen levels have remained steady. Her heart still races and the brain fog won’t lift at times. Word finding and critical thinking are still difficult, and she is currently in speech therapy. She has dizzy spells and has fallen down for seemingly no reason. She chronically feels exhausted.

Hayes resigned from her job, though she recently started working from home doing billing for her previous employer. Her colleagues provided a ray of light in a dark time; her boss held her position in hopes that she could return.

Her saving grace has been support from a Facebook group called “International COVID 19 Long-Haulers Support Group,” which has about 5,000 members. The group has shown her she is not alone. She takes strength from sharing her experiences with those who understand, and comforting those who have walked in her shoes this past year. She also credits the nurse in the ER and Dr. Ray for believing her when no one else would.

“To find someone who actually listens to you,” Hayes said. “I think doctors want to help but they don’t know what to do. I had every test under the sun. Ultimately, doctors can only try to treat symptoms.”

She’s currently on no medications, but tries to head things off as best she can. It agonizes her the burden her health has put on Zeb, her parents, her kids.

“It’s hard to be a caregiver to begin with,” Hayes said. “It’s really defeating when I have a six-day good stretch, then four bad days. He’s asked me ‘When is this going to end?’ And I feel like I’m letting myself down, letting them down.”

There are terribly hard days, but she’s optimistic she’s turning a corner. She feels God has a purpose for her, for what she has been through. She also has advice for family members watching a loved one struggle, or doctors whose patients are trying to tell them something.

“The best thing you can do is believe in them and show them that you care,” Hayes said. “This has been a medical nightmare.”

She wants other COVID long haulers to know they’re not alone, that they’re not crazy, even if others don’t understand, to reassure them that it does get better. She has been having longer stretches of good days.

“There’s so many people who might have Post-COVID and not even know it,” Hayes said. “It might not be a new issue. It could be months later.”

Hayes is thankful for her husband and parents, but especially her children’s strength and resilience. Jack, the oldest, helps with anything and everything. The others bring her toys to help make her feel better.

“It breaks my heart that the kids have to know how people suffer, but it teaches them empathy,” Hayes said. “

Hayes also said she would never discourage anyone from getting the vaccine; she feels security in knowing the shot has given her added protection from the Delta variant.

“I have learned so much about myself, my strength and determination,” Hayes said. “I’ve been given a voice I didn’t know I had, to help others going through it. After facing death for a month-and-a-half, I was so naïve to it before.

“If it has taught me anything, the anxiety and depression community is such a large and secret community, no matter the cause,” she said. “Sharing my story is such a healing thing.”

Tiffany Hayes credits her parents Brian and Annette Kelley of Prescott (pictured with her mom) for dropping everything and helping care for her and her children while she was bedridden with unexplained symptoms. Photo courtesy of Tiffany Hayes

November 16, 2021