Lauren's Story
After five months in five hospitals, Wisconsin woman makes it home
When they stood before family and friends, committing to love each other in sickness and health, Lauren and Brent Riemer never imagined how those vows would be put to the test just a few months later.
“Thank goodness we didn’t wait to take our honeymoon,” Lauren said.
Lauren, then 32, spent five months in five hospitals spanning two states, with physicians at one point suggesting to her family that they consider end-of-life care.
“I was given a 5 percent chance of survival,” Lauren said.
Lauren and Brent are now in year two of married life – their “do-over year” – she calls it.
An unexpected diagnosis
Lauren was born and raised in Wisconsin and has always been active. She rides horses and snowmobiles. She trap shoots and paints. Until her illness, she worked full time in customer service and stayed healthy by working out.
In early 2020, as a pandemic was taking hold across the United States, Lauren got sick. It started as an ear infection in one ear, then both ears, then a sinus infection. Antibiotics and steroids helped but as soon as the medication ended, her symptoms returned. Then came the coughing, joint pain, blood blisters and weakness so severe Lauren couldn’t get out of a recliner on her own.
Lauren was hospitalized and doctors were stumped until a lung biopsy revealed the diagnosis: granulomatosis with polyangiitis (GPA), a rare and serious autoimmune disease. GPA causes chronic inflammation in the small blood vessels. Without treatment, it’s often fatal.
“Once we found out what it was, it was a big relief,” Lauren said.
Lauren was treated with steroids and began undergoing IV treatment with rituxan, an immunotherapy drug, twice a year. She got back to work, back on her horse and back to her life. And, Brent – her high school sweetheart – proposed.
Lauren’s relapse
Four years after her diagnosis – just after their wedding and the start of house hunting – Lauren was doing so well that a doctor changed her treatment to a pill that was gentler and also safer to conceive a child.
“I think that’s where we messed up,” Lauren said. “The doctors don’t think the dosage was high enough.”
Lauren relapsed, big time. She was back on steroids and went to the hospital three days in a row for IV treatments.
Her face swelled, her body broke out and she began coughing up blood.
She was admitted to Aurora Medical Center for one week and made it home, but a week later, Lauren was back at the emergency room because her blood oxygen level was only half of what was normal.
This time, in addition to the GPA, she had COVID, pneumonia, influenza and rhino virus. She also now had blood clots in her calves and lungs.
The oxygen she was receiving through her nose blew a hole in her lungs. Lauren needed to be intubated.
Two days later, when the team at Aurora had done all they could do, Lauren was flown to Froedtert Hospital in Milwaukee and connected to extracorporeal membrane oxygenation (ECMO), a life-support machine that performs the work of the heart and lungs. ECMO circulates blood outside the body, adds oxygen, removes carbon dioxide and returns the blood to the patient.
Four days later, she was back in a helicopter and on her way to Northwestern Memorial Hospital in Chicago, 110 miles from her home. The plan now was for Lauren to undergo a lung transplant.
“I had towers upon towers of IVs running into me,” Lauren said. She’s seen the photos of herself lying in bed, so swollen that she barely recognizes herself.
Turns out, Lauren could not undergo the transplant because of her COVID diagnosis but still remained at Northwestern for seven weeks on ECMO. Day after day, Brent and/or Lauren’s mom took the train from Milwaukee to Chicago to be with her, while her sisters, cousins, aunts and uncles were also frequent visitors.
Lauren was unconscious most of that time and didn’t hear the weekly conversations between her family and her care team, including the one where physicians told her husband and mother that Lauren’s recovery was not going well and at some point, they may want to think about comfort care.
“They weren’t giving up on her, but they prepared us for what could go wrong,” Brent said.
Lauren’s mother wasn’t having any of it. She told the doctors the bloated, unresponsive woman lying in the bed was not her Lauren.
She pulled out a photograph from Lauren and Brent’s wedding, with Lauren beaming in her white lace dress, her long blonde hair pulled into an updo.
“She told them, this was her Lauren, and that she’s not even near what she was or will be again,” Brent said. “She said, ‘Lauren doesn’t give up and don’t you give up on her.’”
Recovery begins
Slowly, Lauren began to recover. Physicians lowered the medications that kept her sedated.
“She started coming around. Every two to four hours, they’d come in and ask her to wiggle her toes or I’d put my fingers in her hand and she’d squeeze my hand,” Brent said. “We saw signs of hope and that she was still in there.”
Lauren remembers waking for a bit in a dark room with a computer monitor that had a purple screen and “NW” on it. She knew she was in a hospital, but didn’t know where. She remembers a male nurse holding her hand and telling her how great she was doing.
In her mind, she responded to him but in reality, Lauren couldn’t talk. She had a tracheostomy, a slit in her windpipe with a tube that connected to her ventilator.
When Lauren fully awakened a few days later, her husband and mom, who took turns sitting by her side every day, explained where she was and why.
Lauren no longer needed ECMO, but had grown dependent on some of her medications. Withdrawal was excruciating. Her heart raced. She struggled to breathe. She was hot, sweaty, anxious and couldn’t sleep.
“One day I was up for over 24 hours. I was going crazy out of my mind,” she recalls. “And it sucked not being able to talk, to communicate that I was uncomfortable or hot or thirsty or scared.”
Her hands were too unsteady to write on a white board but her mom “got super awesome” at reading her lips. During this time, physical and occupational therapists began visiting daily to help Lauren start to regain the strength she’d lost over the past three months. She started with a bed that slowly tilted her lying to standing position as therapists held onto her. She progressed to a lift that moved her from her bed to a chair.
Even though Lauren still couldn’t breathe, eat, talk or walk, she was stable and ready for the next step in her journey.
Transition to Select Specialty Hospital
Lauren transitioned from Northwestern to Select Specialty Hospital – West Allis, a critical illness recovery hospital located much closer to her home and family. There, a physician-led multidisciplinary team sat down with her and her family to create a rehabilitation plan.
“Once I got to Select, everything happened really fast. It was like, ‘This is the game plan,’” Lauren said. “Right away they started vent weaning.”
Each day, Lauren’s respiratory team lowered her ventilator settings or turned it off completely for increasing amounts of time so that Lauren’s lungs could regain the ability to support her breathing.
A special valve was attached to her tracheostomy tube, allowing air to move through her vocal cords. Lauren could speak for the first time in three months. When her mom came into her room, Lauren surprised her with, “Hi Mom.”
Her mom’s response – tears – were no surprise to anyone.
Lauren called family and friends. Unbeknownst to her, her community had rallied behind her family, holding fundraisers to help cover their travel expenses.
Within a week of arrival at Select Specialty Hospital, Lauren passed a special test indicating she could swallow without aspirating and she was allowed to have ice chips.
“I was so excited for ice chips. Jello and chicken brother were pretty exciting, too,” Lauren said. Then came her first real meal: grilled cheese and tomato soup.
Lauren said goodbye to her feeding tube, then her ventilator, then her trach.
Lauren also had daily physical and occupational therapy. Her first few days, it took two people to keep her upright as she sat on the edge of the bed for just 10 minutes. But in the weeks that followed, she began a series of exercises that started with stretching movements and lifting light weights at the edge of her bed. Therapists taught her exercises she could do while she lay in bed, watching TV.
Later, when she could stand, she had to keep a balloon in the air, see how far she could push herself down the hall in a wheelchair and eventually, she walked those same halls.
Lauren progressed with each day and she regained mobility fairly quickly; she attributes that to the core strength she developed from horseback riding.
She recalls how one day when she tried to stand, her heart raced and blood pressure skyrocketed.
“They were like, nope, you’re not going to do it today. I cried,” she said. “But that’s’ the thing with physical therapy. One day you do great and the next day you can’t because your body is healing.”
Five weeks after her admission to Select Specialty Hospital, Lauren could breathe, eat, talk and she could walk with a walker. She could shower, feed herself and dress. While she was physically ready to transition to an inpatient rehabilitation hospital to continue regaining her independence, emotionally it was a bittersweet time.
“I got to love all the staff. The nurses and PT and OT and cleaning staff – everyone was so amazing,” she said. “They took time to talk to me, helped me untangle my hair and everyone was bubbly with good attitudes. I got lonely at times and they did little things to help me feel better.”
Lauren next spent two weeks at the Rehabilitation Hospital of Wisconsin, participating in intensive therapy.
It paid off. Nearly 160 days after her first hospitalization, she made it home to Brent, their dogs Remington and Dottie, and her horse, Baby Girl Savannah.
Life is good
For the first six months after Lauren arrived home, she still needed supplemental oxygen and lots of naps. She tired quickly, even just sitting in a chair watching a movie. She completed a 36-class pulmonary rehabilitation program at Froedtert Menomonee Falls Hospital and no longer needs a lung transplant.
While life is slower these days, Lauren can drive a car and tractor. She can wash dishes and vacuum without oxygen. She and Brent have camped a few times. Lauren was cleared to ride her horse and looks forward to snowmobiling this winter. Her hair, some of which she lost during the ordeal, is growing back. Her husband teases that she has a skater boy look.
She feels normal again.
“We appreciate life more,” Brent says. Lauren still has to be careful; her immune system is still returning.
When asked what he sees when he looks at his wife, Brent jests, “My $5 million baby.”
He takes a deep breath.
“I see my love. My miracle. Someone who is super strong. Someone who has the drive to keep moving forward and trying. She is amazing.”