As a sport psychologist working with top-caliber collegiate and professional athletes, Carey Benson understood the importance of probing people about their “why” to help them stay motivated and keep their heads in the game.

Years later, Carey had to think of her own “why” and practice the same mental toughness and physical resilience she once worked to inspire in others. Now she was the one facing very challenging times as she worked to recover from a rare, life-threatening autoimmune disorder that nearly proved fatal.

“My why is to get back to where I was. To ice skate again, get back on a horse, and to hike without worrying about falling, slipping or running out of air. The only way I know I can get there is if I push myself to get the strength, balance and lung capacity I once had. If I don’t, I will never get back to where I was,” Carey said.

“There are days when I don’t want to get out of bed, when I feel tired or overwhelmed, but I push myself to get out of bed every day,” she said. “I walk the dog, I do my physical and speech therapy, focus on all the exercises the therapists gave me: one day legs, one day arms and one day both. Then I repeat. I know I have to do this on a daily basis to recover.”

Carey is accustomed to challenges and the pressure that accompanies them. At a very young age, she was participating in national and international equestrian competitions in a variety of areas in both English and Western disciplines. She had a trove full of ribbons and trophies, won Rookie of the Year, and spent most summers on the back of a horse. The show circuit was a big part of her life into her college years.

“I think the thing I love most about being on a horse is the feeling of freedom it brings. I feel at one with the horse, and very strong and independent,” Carey said. “Sitting in the hospital in the ICU, I went back to the point when I was competing, and I remembered how strong I was and my ability to be in control of a big animal.”

Getting that strength back is a priority now after months of suffering from a mysterious ailment that made her joints and muscles ache. Her ordeal became worse when she had shortness of breath, and then, even more serious when she began coughing up blood.

“She came to us really sick,” said Dr. Xiang “Jess” Li, who was on call in the Cardiothoracic ICU at UCHealth University of Colorado Hospital on the Anschutz Medical Campus when Carey arrived in the early morning hours of July 31. She arrived on a medical flight from a hospital in Boulder, where she was being treated over the previous few days.

“She had so much blood in her lungs, and she was maxed out on the ventilator, meaning it was on the top setting and couldn’t go any higher,” Li said, adding that Carey was in a medically induced deep sedation to synchronize her breathing with the ventilator.

“She was actively dying.”

Breathing troubles, joint pain and coughing up blood left Carey facing a terrifying, yet still unknown, autoimmune diagnosis

Born in Colorado and raised in Wyoming, Carey moved back to Denver in 2007 after earning a psychology degree in college and then going on to obtain a master’s degree in sport psychology. Athletics has been a huge part of her life. In addition to equestrian activities, she and her roommate launched a women’s ice hockey club during her undergraduate years at St. Mary’s University of Minnesota before she went on to play for the varsity team her junior and senior years.

Married to her husband Paul for three years, the couple had a happy life together, along with his 16-year-old daughter Sofia, and they welcomed an Australian Shepherd puppy, Duncan, into their lives earlier this year.

It was around May that health troubles began for the 48-year-old Denver resident.

One day, Carey woke up with a bad pain in her hip joints that migrated to her knees and up to her arms and hands. She endured it for the next couple of months and by late July was scheduled to see her doctor when she experienced a more alarming symptom – she began to cough up blood.

“Clearly, that was not a good thing,” she said.

Her doctor suspected Carey had a very specific and rare autoimmune disorder. When blood tests came back pointing in that direction, she was scheduled for a CT scan, a lung biopsy and additional pulmonology work at a Boulder hospital to nail down the diagnosis. With more answers, Carey could begin treatment, likely involving some steroids that would help her control her newly diagnosed autoimmune disease and help heal her lungs.

But a few days before the appointment, her coughing had grown worse, and her oxygen saturation level – which should range from 95% or higher – dropped to the very dangerous 50% or 60% whenever she coughed, according to her portable pulse oximeter.

She and Paul called 911, and after an ambulance trip to a local ER, Carey was sent home with an oxygen tank as the couple hoped that she could hold out until her upcoming medical appointment a few days later.

But her condition became dire, and Paul drove her to Boulder with the intent of starting on the expected treatment immediately. This was July 26, and one of the last things Carey remembers until waking up a month later at UCHealth.

She spent four days at a Boulder hospital, where staff tried to treat her deteriorating condition. She was intubated (a breathing tube was inserted into her windpipe to keep her airway open), and a ventilator provided supplemental oxygen.

Doctors there, unable to perform a lung biopsy because she was so ill, reached out to peers on the Anschutz campus, knowing UCHealth would be able to meet Carey’s advanced medical needs. She was transported via a medical helicopter at 1 a.m., where UCHealth doctors would race to save her life.

“I didn’t know it was life threatening right away,” said her husband, Paul. “… I didn’t know when we went into the Boulder hospital how severe it was.”

Carey goes on ECMO to give doctors time to diagnose her disease and treat it effectively

When Carey arrived at UCHealth University of Colorado Hospital, doctors were ready to pinpoint her illness and get her the appropriate medical care ASAP to help her.

To increase her chances of surviving, she was placed on ECMO. ECMO, or extracorporeal membrane oxygenation, is a life-saving measure reserved for patients with the highest level of need.

ECMO helps between 60 and 100 UCHealth patients each year from Colorado and other states, including Texas, New Mexico, Wyoming, Montana and Arizona.

An external oxygenation system that supports the heart and lungs, ECMO would give Carey the time needed for treatment and recovery.

Mechanical breathing machines can injure the lungs of very sick patients with too much pressure as they pump air into the lungs. By comparison, ECMO allows the lungs to rest and does the work for them, mimicking their function outside the body. Physicians thread tubes through a neck vein into the heart, which then pulls blood out of the body. Carbon dioxide is removed from the blood through the ECMO machine and replenished with oxygen, which flows back into the heart.

Carey was in the hospital’s cardiothoracic surgery intensive care unit (CTICU), being cared for by a specialized, highly trained multidisciplinary team assembled for this type of situation.

She was placed in deep sedation and on ECMO for 13 days.

“ECMO was a bridge to treatment for her,” said Dr. Michael Cain, UCHealth thoracic surgeon who was on Carey’s care team. “It doesn’t fix the problem, but it gives you time. In Carey’s case, for her body to repair the damage to her lungs and the medical treatment to work and help facilitate her recovery.”

ECMO also gave the medical team time to biopsy a sample of Carey’s lungs and confirm what various doctors had suspected for weeks: that she had a rare type of autoimmune disease called granulomatosis with polyangiitis or GPA.  

Autoimmune disorders occur when the body’s immune system attacks its tissues instead of defending them. The origin of these diseases is not exactly known, but is likely due to several factors, including genetics, environmental factors, infections, immune system dysregulation and hormonal imbalances.

Specifically, with GPA, the disease attacks the body’s tissues and blood vessels; in Carey’s case, it caused inflammation in her lungs, leading them to bleed and retain carbon dioxide instead of expelling it.

Our lungs bring oxygen from the air into our bodies while removing carbon dioxide and other gases. A buildup of carbon dioxide can cause a dangerous chemical imbalance in the bloodstream and negatively impact the brain, kidneys and other organs, including the heart.

“While we do occasionally see GPA in patients, the onset of symptoms is usually slower, allowing it to be controlled with medication,” said Cain, also an assistant professor of cardiothoracic surgery at the University of Colorado School of Medicine at the Anschutz Medical Campus. “The severity of her illness was rare.”

So unusual in fact, that there was a paucity of research for a case like Carey.

“We looked and couldn’t find any data for a patient like her ever being on ECMO,” said Li, also an assistant professor of anesthesiology at the University of Colorado School of Medicine. Li worked with Carey throughout her hospital stay.

“She was such a fighter. She really wanted to get better, and she had such power – I remember seeing her standing up while she had her ventilator tube attached. She was very diligent about doing physical therapy while her husband was there, and he was constantly asking questions and being very supportive.”

Carey, her husband and family face granulomatosis with polyangiitis diagnosis

While Carey was in the hospital, Paul, a software company owner, dealt with his fear and anxiety by becoming an engaged part of her care team. He was there all day, every day, and peppered the doctors, nurses and therapists with questions about her treatment during their morning rounds.

“I was taking notes and actively participating. I knew all her meds and dosages, and when they changed, I questioned it,” he said. “That’s how I managed and processed what was going on and tried not to be too emotional about it.”

He shed tears a few times, including once when he brought his daughter to visit Carey, but he kept busy as an advocate for his wife and writing a daily blog to keep family and friends updated.

“While you trust the medical specialists, it’s important to pay attention, be involved and speak up if you don’t understand or disagree with something going on.”

During her two weeks on ECMO, Carey gradually gained strength; her breathing tube was removed, and she once again could breathe on her own and became more alert.

“When I woke up, it was all fuzzy. I didn’t remember anything from the previous few weeks, and I didn’t know what day it was. Someone told me it was August, and in my mind, I thought, ‘What happened to July?’ It was very emotional seeing my husband, and I was just trying to process everything.”

Her treatment included steroids, plasma exchange (PLEX) treatments, and immunosuppressants, along with antibiotics to overcome a bout of pneumonia she caught (steroids can often weaken the immune system).

After several more weeks in the hospital – six in total – she was discharged.  After a stint at an inpatient rehab facility, she finally headed home Sept. 10.

Recovering from GPA and managing her new autoimmune disease

Recovering now and taking time off from her position as a recruiting director of a startup, Carey is managing her medications – a blood thinner and a GPA-specific drug that will hopefully keep her disease at bay and eventually put it into remission. She is also weaning off steroids and is grateful for the treatment she received.

“The UCHealth doctors, nurses and entire medical team were second to none,” Carey said.

While there is no “cure” for GPA, doctors say it can be managed with a drug regimen that will keep it under control and hopefully keep Carey out of the hospital. Carey’s physical therapy and speech therapy fill her days, along with puppy Duncan and getting acclimated to daily life again. She dreams of getting back to horseback riding, if not this year, then next, along with hiking and strapping on some skates to join Sofia, who plays competitive ice hockey like she once did.

As she practices her exercises, she exercises patience as well.

“It can be frustrating not being as strong as I used to be. I used to bound up the steps two at a time. But I know that this is a process, and this experience has made me reflect on my outlook on life. Bad things happen, and life is not always fair, but it’s how you deal with it and how you make the best of it.

“Focus on what you can do and what you can control. I can be unbelievably stubborn, and I am not going to give up and stop fighting.”

She often now falls back on her equestrian background and training and digs deep for the discipline and rigor it demanded … then and now.

“I stay in the ‘now’ for what I need to do to recover, and I focus on the present day. Being on a horse requires balance and muscle strength, which I work on, along with being mentally strong and present. When I climbed on top of a horse, I had to be in the moment, and if I was having a bad day, I had to let that go and think positively: This is all now part of my recovery.”