In June 2019, Kristen Knight's world changed when her husband Bruce passed away unexpectedly after 27 years of marriage. He was a headlining comedian and she was working in the show business industry in Las Vegas. They had no children and she was not close with her family, so his death not only shattered her whole world, but it also left her feeling very alone.
About 17 months later, in November 2020, Kristen was watching television when she tried to pick up the remote control on the side of her bed. Her left arm wouldn't move no matter how hard she tried. Frustrated, she tried to say (out loud), "What is wrong with my body?" Her speech was slurred, which confirmed something was seriously wrong.
She called 911 and an ambulance came and took her to the nearest emergency room where they said she was having a stroke. Every second matters after a stroke, so she was lucky to notice a problem right away and get immediate help. If she had been asleep or not recognized how serious the situation was, she may not have received treatment in time.
When a stroke patient arrives at the hospital within a specific timeframe, doctors can administer a clot-busting drug called TPA, or tissue plasminogen activator, that breaks apart the clot and helps restore blood flow to the brain or other area of the body. Doctors commented on how lucky Kristen was to have arrived in time to get the TPA, which may have saved her life. But she didn't exactly feel lucky.
"I was laying there paralyzed on the left side and I didn't feel lucky at the time. But I didn't lose my eyesight, the ability to speak, or any of my cognitive functions, so it could have been much worse," said Kristen.
The cause of her stroke was (and still is) unknown since Kristen had no family history or common risk factors. Her initial hospital visit was only a few days in the intensive care unit before she went to a nursing home facility. After discharge, she went home but ended up back in the hospital three more times with another clot and brain hemorrhages.
Kristen would eventually go to two separate rehab facilities in the Las Vegas area as part of her ongoing treatment, but neither provide the care she needed. Each time she was discharged back home, where she was completely alone and partially paralyzed. She felt both helpless and hopeless. She wanted to be readmitted to the hospital just to have someone to help her with daily living activities like bathing, eating, and using the bathroom. She had good insurance, but didn't get any support to set up home health care, and didn't know how to access the services she needed.
"I was very, very suicidal, extremely suicidal, I even started planning it," said Kristen. Stroke survivors often have severe headaches and anxiety, and doctors prescribe strong pain and anti-anxiety medications to help. She thought about how much alcohol she would have to mix with those pills to end her life. "It seemed like the medical staff who were supposed to be helping me really were working against me, and it was terrible," she said.
There was one silver lining, though. Before the stroke, Kristen had reconnected with an old friend, Doug. They had worked together about 35 years ago composing music. He was a sound engineer with a studio at his home, and she had reached out to discuss working together again.
Doug and his wife Judy heard she was in the hospital and came to stay with her while she recovered. Her bills were piling up and her landlord was threatening eviction. She was waiting on a payout from her insurance company, but in the meantime utilities, rent, and other payments were still due. Other friends helped with rent so she would have a place to live, but it wasn't a long-term solution.
Then Doug and Judy suggested Kristen come stay at their home in Utah. They built a room that could accommodate her needs and would take her to doctor's appointments. Prior to her stroke, Kristen had only met Judy once over dinner, and her professional work with Doug was many decades ago. However, the couple soon became like family and she agreed to move in with them.
"They are just so generous and selfless, truly amazing people," said Kristen. Doug and Judy also suggested that Kristen might benefit from going to University of Utah Health's brand-new Craig H. Neilsen Rehabilitation Hospital that opened in 2020 in Salt Lake City.
It was a battle to get her doctors in Vegas to discharge her to the rehab facility, though. They were pushing her to go to a nursing home again, but she insisted on rehabilitation. Her caseworker in Las Vegas was not helpful, so she called admissions on her own and fought with her insurance to get accepted. Before the hospital would release her, she also had to arrange for medical transport.
She was still struggling with depression and suicidal thoughts when she first arrived at the Neilsen Rehabilitation Hospital. However, the generosity of Doug and Judy was enough for her to decide to keep going. Then she got to U of U Health and her whole life changed. Upon arrival, the first change she noticed compared to her prior experiences with rehab and the nursing home facilities was the staff.
"Everyone was so nice. I told them about my fight to get there and they kept saying they were happy to have me there, and I deserved to be there," said Kristen. She didn't feel the same way initially, but after meeting her new doctor she knew this was where she needed to be.
Steven Edgley, MD, is the director of stroke rehabilitation at U of U Health. After starting his medical training to become an ophthalmologist, he experienced a stroke at the age of 28 and changed his medical career to focus on stroke prevention and rehabilitation. He knew Kristen had already been through several treatments at the hospital, acute rehab, and nursing homes prior to arriving at the Neilsen Rehabilitation Hospital. He was the first provider who really knew what she was going through, which helped her to trust him and his team.
"For most people, stroke recovery is the hardest thing they will go through in their lives, and it takes a tremendous amount of mental fortitude and a team with the skillset to facilitate that recovery," said Dr. Edgley.
Dr. Edgley and his team also knew that Kristen had struggled with depression and suicidal thoughts, and just how difficult that can be for so many stroke patients. Medical teams often focus on the physical challenges of stroke recovery, but the mental and emotional aspects are equally important.
"It's critically important to understand and treat the emotional and psychological aspects of stroke. Patients are mourning loss of function, and they are dealing with psychological trauma. Not addressing those factors puts a patient at a grave disadvantage right out of the starting gate," he said. "One of the very unique things that we have [at Neilsen Rehabilitation Hospital] is awareness and understanding of the psychological and emotional impact of these really difficult life events. We have wonderful psychologists and counselors who are part of our stroke recovery team."
Dr. Edgley also emphasizes that rehabilitation treatment is more than just restoring physical function. It's about doing everything possible to promote a better quality of life. "We're not just trying to get a patient out of the hospital and home, we truly think of the long-term effects of being able to enjoy their life—a night at a restaurant or the movies, being able to spend time with loved ones or in social situations—those are the things that really promote quality of life."
That begins with putting the patient in control of their treatment and engaging them with a team-based approach to push the limits of what they might think is possible in recovery.
For Kristen, that whole-person approach to care really stood out. When she told them she was struggling with depression they didn't threaten to put her in a mental hospital; instead, they connected her with mental health professionals who helped her develop a coping strategy.
"It's such a well-rounded program, they treat every aspect—physical, mental, emotional—and they are not judgmental," she said.
After leaving Neilsen Rehabilitation Hospital, Kristen moved back in with Doug and Judy. She set a goal to walk independently in the next six months and her recovery continues to progress (even if it feels slow at times). She still thinks about those dark days when all she wanted was for her life to be over. Her stroke recovery hasn't been a straight line, it's had ups and downs, but she doesn't have those same feelings of hopelessness anymore.
"The most valuable thing you have is hope. To have hope is so precious and priceless, and that is what U of U Health gave me. I know there are better days ahead and people who care about me, so I want to be a beacon of light and talk about it so I can help others," she said.
