“This Virus is so damaging” Elmwood Park family after they all contracted COVID-19
Eight members of an Elmwood Park family fell ill with COVID & one of them died. It’s been a long, tough road back for Sofia Burke.
Anne-Marie Caruso, NorthJersey.com
When Sofia Burke spoke to a reporter from her hospital bed just before Thanksgiving about how COVID-19 had wormed its way into her Elmwood Park home, infecting eight members of her extended family, she thought the worst was behind her.
A day earlier, in the hospital’s intensive care unit, she had held the hand of her father as he died. Two weeks earlier, as doctors intubated him, she had told him she would see him when he woke up — and believed it. Now the 93-year-old was gone.
At home, her mother was on oxygen while recovering from the virus that she herself had inadvertently brought into the house after giving an elderly friend a lift.
Sofia’s husband, brother and eldest daughter, 20, had less severe cases but were nonetheless exhausted; one replaced the other on the living room couch as they struggled to keep the household running. The two youngest children, ages 6 and 2, appeared to have relatively mild cases.
Sofia, 43, didn’t know then that her own fight was just beginning.
She didn’t know there would be times over the next two months — when her oxygen levels plunged and sepsis and pneumonia set in — that she wouldn’t be sure she’d survive. Or that she would miss her son’s 7th birthday, Christmas and New Year’s before she would touch any of her family members again.
She didn’t know that when she finally went home on Jan. 21, she’d be too weak to walk up the stairs, or that when eight weeks of pulmonary rehabilitation ended in April, she’d still need a plastic tube tethered to a supply of oxygen to help her breathe. She didn’t know that when scans of her lungs were taken to assess the damage, the scars would speckle the image like lights on a Christmas tree.
What she did know, when the gravity of her illness set in, was that she needed to find strength, to fight, and to have a plan, if she was to survive. Survival meant recovery, and recovery — as a COVID long-hauler — would take time.
She saw no alternative.
She was the mom, the one in charge of a diabetic toddler, a son with attention deficit disorder and a daughter with learning disabilities. She was the nurse who loved the residents of the North Haledon nursing home where she worked. She was the daughter who needed to arrange the funeral of her immigrant father, whose family was scattered in Mexico and Guatemala.
Sofia Burke’s father: Otto Bowless went where ‘the wind carried him,’ from Guatemala to NJ
“From the moment I knew that I was very ill and my lungs were really infected,” she said last week, looking back, “I knew that if I made it through COVID and survived, it would be a long recovery. I started trying to kind of plan what road I would take, from my experience helping other patients and seeing them recover.”
Real worry, but joy and gratitude, too
The path of recovery for COVID long-haul patients is as varied as the course of their initial infections.
Some, like Sofia, must cope with weakness and muscle wastage from weeks in a hospital bed, as well as lung scarring and stiffness that causes shortness of breath. Some have heart injuries or newly diagnosed high blood pressure or high cholesterol.
Others have migraine headaches. Many have fatigue and brain fog. They may suffer anxiety, depression and stress. Brian Burke, Sofia’s husband, says he experienced blurred vision from the effects of the virus.
So much is unknown about the duration or prognosis of these new conditions that the uncertainty itself can cause anxiety. Will these symptoms become chronic conditions that will last a lifetime? Do they set the stage for worse health crises?
These worries have been part of Sofia’s recovery. But so have joy and gratitude.
Over the past nine months she learned that many people, some of them total strangers, were willing to help. They contributed to a GoFundMe campaign for her dad’s funeral expenses and her family’s living expenses. They brought Christmas gifts to the house for her kids. They inspired her to exercise harder and push past her limits. And they held her job open and welcomed her back to work when she was ready to return.
“Sometimes I feel so undeserving,” she said, tears welling in her eyes after her second day back at work. “I have a little survivor’s remorse. There are so many moms that died … What is so special about me? They were special too, and they had families, and these kids are now growing up without their moms.
“I like to be a giver, I never want to receive,” she said. “When you end up on the other end, you feel guilty, almost.”
Recovery — step by step
Getting home on Jan. 21 was her first victory. That — and taking a shower.
In the hospital a few days before, she was finally able to maintain her oxygen levels without using a high-flow oxygen mask. Now, back home, she planned to wean herself off oxygen. Until then, a compressor with a plastic tube feeding into a nose cannula would help her breathe.
To get to the bathroom, Brian set up a folding chair for her in the hallway. She grabbed it for support. One step at a time.
That day was her daughter’s 21st birthday. “Honestly, I just wanted to get home,” Sofia said.
A physical therapist came to the house to help her regain her strength. Eight weeks of pulmonary rehab followed. Her brother drove her to rehab, until she could do it herself. Three times a week, she walked on the treadmill, pumped a pedal exerciser with her arms, performed her leg exercises.
She watched as another post-COVID patient accelerated to running speed on the belt with no dip in his oxygenation. Inspired, she worked harder.
But to her disappointment, she still needed her portable oxygen tank, even when she graduated from rehab to a gym. “Is this my new normal?” she wondered, as she packed the tank into a book bag to take her 2-year-old to Mommy and Me classes.
Friends took her to Manhattan, her first outing with oxygen. Could she last a whole day? Did she have enough batteries? Would people stare? She tried her first Krispy Kreme donut — “Heaven! They warmed it up!” — and went to the top of the Empire State Building. The outing was a success.
At the gym, with the help of a trainer who motivated her, made her laugh, taught her breathing exercises and gently pushed her, she finally weaned off the oxygen completely. That was May 21.
This month, she returned to the nursing home — working part-time to start.
Full of anticipation, she couldn’t sleep the night before her first day back. The staff and residents had missed her. They knew what she had gone through.
“It felt surreal to be back where I didn’t know I’d ever be again,” she said. There was a time in the hospital where she had thought her life was over. And now she was back among those she loved almost as much as her own family.
“Sofia’s back,” a member of the administrative staff announced over the public address system during lunch in the dining hall. Sofia went from table to table, hugging each person. They cried. She cried. ”So much happiness,” she said.
She knows her recovery is not complete. She’s working to maintain a healthy weight, so as not to overtax her lungs.
But surrounded by her family, with her kids zooming around the room, she occasionally pauses.
“I sit back quietly, and for that moment, I’m just, ‘Thank you God, for letting me stay,’” she said. “’Thank you for letting me just be here with my kids to enjoy this moment — this moment where they’re jumping, laughing, and I can just hold them.”
There was so much she didn’t know when her ordeal began. But now, sitting in the living room, she knew this.
Lindy Washburn is a senior health care reporter for NorthJersey.com. To keep up-to-date about how changes in the medical world affect the health of you and your family, please subscribe or activate your digital account today.