For this medical group, ‘brain fog’ is not a new term
Just a decade ago, facility was one of only three in the country
LEXINGTON, Ky. (UK Public Relations) — Brain fog and long-hauler are two terms that many have come to know in recent months due to the ongoing COVID-19 pandemic. However, the struggles associated with the terms are nothing new for those who work in places like UK HealthCare’s Intensive Care Unit (ICU) Recovery Clinic.
“We’ve been talking about this for 10 years and nobody really listened until there were suddenly a million new people to talk about,” said critical care physician Ashley Montgomery-Yates, M.D., who also serves as UK HealthCare’s chief medical officer for inpatient, emergency and core services.
The ICU Recovery Clinic has been part of UK HealthCare since 2013. When Montgomery-Yates started the clinic, it was only the third of its kind in the nation. The ICU Recovery team consists of physicians, nurse practitioners, pharmacists, physical therapists and social workers. Together, the team helps patients work through physical and occupational therapy, medication management, coordination of care, communication with the primary care provider, and the return to life outside the confines of a hospital.
Montgomery-Yates says before COVID-19 they would receive one or two referrals per week. Now, she says they are seeing upward of 20 each week.
“The volume of humans that need this service is now ginormous,” she said. “I hope at some point we can go back down to a more normal volume, but the truth is there were probably a lot of patients who weren’t getting referred to clinics like this because they didn’t know they existed.”
The COVID-19 pandemic has caused many people to get sick — some of those becoming critically ill and ending up in the ICU for weeks at a time. Long ICU stays can lead to physical and mental issues that extend beyond the original reason a person is admitted to the hospital.
“When you are in an ICU and your kidneys don’t work, and your legs don’t work … your brain also doesn’t work,” Montgomery-Yates said. “We do a lot of things in the ICU to keep people still and calm.”
For patients who can leave the hospital, being discharged often does not mark the end of their illness, but the start of their recovery chapter. In those patients, Montgomery-Yates and her colleagues have been seeing very similar issues for years — not just in the post-COVID patient population. These lingering issues are known as post-intensive care syndrome (PICS).
There are three categories of symptoms seen in PICS: physical, cognitive and psychological/emotional. During a patient’s first visit with the ICU Recovery Clinic, they are taken through a form of standardized testing for each of those categories. Health care providers then walk the patient through their scores and explain areas where they are doing well and areas where they are struggling.
Cognitively, providers look at things like memory, attention and the ability to transition in a conversation. Based on the patient’s needs, they then recommend cognitive work that can be done at home. This may include tasks like completing multiplication tables or reading three pages in a magazine.
“If you get a knee replacement, we do not expect you to get up and start walking on your own — we give you a walker,” Montgomery-Yates said. “If your brain is still healing and you are having trouble with certain pieces, we work to find what you can do to compensate as it heals.”
More people now survive critical illnesses thanks to advances in medicine. The focus of doctors used to be on the more immediate and short-term outcomes of critical patients; however, attention recently has shifted to the long-term outcomes of those who survive these illnesses. Through that shift in focus, physicians and researchers have discovered that while ICU survival has improved, patients often do not return to their former baseline of function for weeks, months, or even years.
The struggles former ICU patients face are more known now thanks to COVID-19. The disease has also contributed to putting a greater volume of people in the ICU who would have never expected a stay there was in their immediate future.
“Our patients now are not the 80-year-olds that really didn’t do a lot of activity at their baseline,” Montgomery-Yates said. “We’re seeing more people that are functional and now suddenly they have this critical illness that still is persistent even after they come out of the ICU.”
Anna Kalema, M.D., is one of Montgomery-Yates’ colleagues in the ICU Recovery Clinic and is medical director of UK HealthCare’s medicine intensive care units (MICUs). She says that in addition to seeing a greater number of young patients, they are also seeing more pregnant and postpartum women.
“They are trying to figure out how to be a mom, nursing their babies, and all that stuff,” Kalema said. “They are struggling with feeling the pressure to be a mom, but they also can’t remember how to tie their own shoes.”
Kalema and Montgomery-Yates have also noticed that people of older generations seem to recover and adjust post-ICU a bit easier than their younger counterparts. As people grow older, they become accustomed to taking multiple medications, dealing with more frequent doctor appointments and even asking others for help.
“If you are 75 you might have some kids, or a church group, or a neighbor that you are used to calling and saying, ‘Hey can you give me a ride to the grocery or go with me to an appointment?’” said Montgomery-Yates.
The situation is very different for someone in their 30s or 40s, an age group that typically doesn’t go to the doctor frequently and who might not have that network to reach out and ask for help. Additionally, people in this age group are often busy caring for other people.
“So now all of a sudden, they are in this mode where they have to have somebody help them get dressed, remember what they are doing today — and who is taking care of their kids, or their parents, and who is going to work and earning money?” said Montgomery-Yates.
Someone who falls into that category is 40-year-old Cathy Turner, who Kalema treated in one of UK HealthCare’s MICUs. Turner, like thousands of other Kentuckians, ended up in the hospital after testing positive for COVID-19. She remembers putting off going to her local hospital when she began having difficulty breathing, because she did not want to end up being away from her two young children.
“I went, and my fear came true,” she said.
In April of 2021, like many others excited to welcome the new spring season, Cathy and her family went on a brief getaway to Gatlinburg, Tennessee. Unfortunately, not long after they arrived back home in Campton, Kentucky, Cathy and several other family members tested positive for COVID-19.
“They told me I had COVID-19 and sent me home,” Cathy said. “So, I was thinking, ‘Okay maybe it is not that bad.’”
But while quarantining at home, her breathing got worse. Her husband, John, persuaded her to go back to the hospital.
“I was scared. I didn’t want to be away from my kids,” she said. “I thought I could quarantine and do everything at home. Then it got to the point where I could not breathe.”
On May 3, Turner was admitted to the ICU at Kentucky River Medical Center. On May 4, John was admitted to the room next door. Less than two weeks later, John was discharged and was then solely focused on his wife’s recovery. He advocated for her and asked that she be transferred to a Lexington hospital.
During her transfer by ambulance, Cathy experienced a medical emergency, requiring the crew to stop at the Emergency Department at Clark Regional Hospital so she could be put on a ventilator. Once stable enough, the transfer continued, and Cathy successfully made it to Lexington.
After being told all treatment options had been exhausted at that hospital, John once again advocated for his wife and had her transferred to UK Albert B. Chandler Hospital. After weeks of hearing that there was little to no hope for Cathy’s survival, John says things really began to change once Kalema and Terren Trott, M.D., entered the picture.
“I credit them with saving her life,” he said. “Others wanted to take her off life support. I couldn’t do that. They are the reason she is alive today.”
Cathy doesn’t remember much from this time, but John says he will always remember how the doctors and nurses at UK treated him like family as they watched his wife fight for her life. After a few weeks, they started to see what they were hoping for: Cathy was showing signs of improvement.
On July 25th, Cathy had recovered enough to be moved to a long-term acute care hospital in Danville. She expected to be there for several months. But after making great progress, she was ready for her next step of her journey after just two weeks.
“I missed my babies like crazy,” Cathy said. “I just wanted to get home.”
She came back to Lexington, spending two weeks at Cardinal Hill Rehabilitation Hospital. Her children being at home provided her with the motivation needed to push forward.
“No matter what I was going through in this struggle, I just kept focused on the picture of my babies,” she said.
After months of not seeing her children, John was able to arrange a surprise visit at Cardinal Hill. Due to COVID-19 restrictions, the children were unable to go inside. But because Cathy had improved, she was able to go outside for some fresh air and was reunited with the driving forces behind her recovery — their 3-year-old and 7-year-old.
“I kept telling myself God is with me,” she said. “I am going to go home to them. That is all I wanted.”
That visit plus one more gave her the final push she needed. On Aug. 25, she was home.
“This is not a rabbit race,” said John. “This is slow, and you have to celebrate the small milestones.”
While there have been leaps and bounds made in her continuing recovery since returning home in August, Cathy and John both say there is still a lot to be done to get back to the quality of life and functioning she had before getting admitted to the ICU in May of 2021.
A walk from the living room to the bathroom leaves her winded, and she still cannot lift her 3-year-old.
“But I am alive and that is the main thing,” she said.
As she continues to work hard to regain her quality of life, she has providers who treat her like family helping her through UK HealthCare’s ICU Recovery Clinic.
“This clinic is the light in the darkness as we try to get back to normal,” said John. “We would not know what to do without them.”
Feeling supported after being able to go home has been huge in Turner’s recovery process. The ICU Recovery Clinic takes some of the burden off of patients like Turner by doing things like helping get her wheelchair fitted correctly, setting up any needed follow-up appointments with specialists, facilitating CT scans and lab work, checking on the progress of her at-home therapy, and ultimately giving her a plan to follow.
“They take a personalized approach on how they are going to proceed and what her goals are moving forward,” said John.
In addition to re-learning physical movements, like going up and down stairs, there is cognitive and emotional healing and strengthening taking place, too.
“She gets down sometimes about not being able to do things she did before like giving the kids a bath without assistance or putting away groceries,” said John.
That is another way the ICU Recovery Clinic strives to help.
“I think the first thing that we really do is normalize the cognitive piece because sometimes people think there is something wrong with them,” Montgomery-Yates said. “Like, ‘I’ve been out of the hospital for six weeks and I still can’t tie my own shoes because my fingers don’t work. And I still can’t go and make my breakfast in the morning by myself.’ We really try to normalize it and say, ‘It is normal and you are going to need support.’ Then we help build that support network.”
Montgomery-Yates and Kalema both hope that if anything good can come out of the ongoing COVID-19 pandemic, it is that people will be more aware of and normalize these struggles that can occur after spending time in the ICU.
“If you have a stroke, there is a whole pathway to guide you … you go to the stroke service, you go to the rehab center and get specific stroke rehab,” Montgomery-Yates said. “If you go to the ICU and you are just as sick, you are just sort of supposed to do it on your own.”
For now, Cathy Turner takes everything day by day, taking small and steady steps towards normalcy all while being thankful to be alive and home with her children. After both she and her husband experienced firsthand the havoc COVID-19 can wreak on the human body, they are also thankful to say they are now vaccinated. At the time of their spring trip to Gatlinburg, the vaccine had not been easily available to their age group, so they were unvaccinated when they contracted COVID-19.
“We wish we had gotten it sooner, but things happen,” said John.
Cathy says even after all she went through, she did have some hesitations about getting the vaccine. But one of her doctors eased her worries, and she realized if she were to get it again, it could be even worse considering the damage to her lungs and overall strength.
The Turner family now lives with a new appreciation for life, fear and hope.
“There were plenty of times we were told, ‘This won’t get better.’ She is a testament that is not always right,” said John.
It’s all thanks to dedicated doctors, the power of faith, and Cathy’s motivation driven by her desire to be back with her children.
“I went through so much stuff and pain,” Cathy said. “But it was worth it, because I am back with my babies.”