The numbers, while daunting, only begin to explain the enormity of one Evanston man’s experience with COVID-19. Eight weeks in the hospital, mostly in the intensive care unit. Twenty-nine days hooked up to a ventilator during two different spans of time – the first one lasting 10 days, the second 19 days – neither of which he remembers. One feeding tube and one tracheostomy. Four weeks of inpatient rehabilitation. Ten weeks of outpatient rehabilitation. Fifty pounds lost. Eighty-six days away from home.
Mahmoud Ajamia, husband of Kristin Brown; father of Mazzin, 27, and Xavi, 24; devoted colleague, friend and neighbor to many, survived his long bout with COVID-19. But his journey was anything but easy.
Mahmoud’s symptoms started March 24, 2020, and worsened in mid-April. On April 19, he was having difficulty breathing. Kristin took him to Evanston Hospital’s emergency room, where he was admitted and transferred to Glenbrook Hospital’s COVID-19 unit the following day. He remained at Glenbrook until June 14, the day he was transferred to the Shirley Ryan AbilityLab, formerly known as the Rehabilitation Institute of Chicago, for intensive physical therapy. On July 14 he was discharged from the AbilityLab and allowed to return home to Evanston, with orders to continue outpatient physical therapy until the end of September.
Mahmoud, 60, does not know how he caught COVID-19. No vaccine was yet available, but he and Kristin, 59, had been very careful about exposure and wore masks regularly. They both worked from home to limit their contact with the outside. They were extra careful because Mahmoud had been diagnosed with non-Hodgkins lymphoma the previous year. He had completed chemotherapy, and by September 2019, he was officially in remission.
Mahmoud’s doctors told him it would take about four to six months to completely recover from the effects of the chemotherapy. By March 2020, he was recovered, feeling like his old self, and back at the gym nearly every day of the week. Mahmoud eats healthfully, is not overweight, does not smoke and drinks only moderately. He has always exercised regularly by biking, running and lifting weights. Before COVID-19, he was biking an average of 100 miles a week. The core of his body was strong, and Mahmoud believes this was one of the three main components that helped him to survive.
“I was supposed to die. But I lived.”
The first component in Mahmoud’s survival was being in good physical shape at the onset. He described COVID-19 as an assault on his body. Being physically fit, his body was able to absorb the blows the disease inflicted on him. As his breathing became more labored, he was transferred to the ICU at Glenbrook, and eventually sedated and put on a ventilator. He was hooked up to machines to help him breathe, absorb nutrition and medication, and clear his body of wastes. Ventilators are lifesaving but risky machines with high mortality rates the longer the patient is sedated and hooked up to the device. If Mahmoud had not been in such good physical shape to start, he’s not sure what the outcome would have been.
The second component was the medical care he received at Glenbrook Hospital. Mahmoud has nothing but the highest praise for the entire staff there, saying, “I was one of the lucky ones, I think. I got great treatment and health facilities … it was amazing. Everything they did, they did to the fullest. They saved me. I was supposed to die. But I lived. I lived another day.” He was admitted early in the pandemic and did not have to wait for a bed. When he needed a ventilator, one was available – both times. The staff were highly skilled, emotionally available and not exhausted or overwhelmed. Everyone had a role to play and they did their jobs well.
The third component in Mahmoud’s recovery was the role his wife, Kristin, played in advocating for him. Kristin, a RoundTable writer and editor, worked as management consultant for an Evanston-based consulting firm during Mahmoud’s hospitalization and recovery. She also kept up with the course of his illness, speaking with his care team to understand lab results and progress updates, and communicating with his oncologist. She had many people to ask if she had questions, but ultimately it was up to her to absorb the information about Mahmoud’s illness and care, digest it, synthesize it, escalate if there were issues and make the decisions in his best interest. When you are used to making big decisions as a couple, not having a partner to talk with is isolating and lonely. Mahmoud says he feels guilty that she had to endure this experience, and is in awe of her strength.
Kristin was consistently kept informed of every aspect of Mahmoud’s care through daily phone calls with his ICU nurse and his primary doctor. COVID-19 restrictions prevented her from sitting by her husband’s bedside throughout his illness except for one 20-minute in-person visit. She never felt excluded from his care.
Weeks later, Kristin learned that this 20-minute visit had been allowed by the hospital because Mahmoud was not expected to survive; it was intended as a “goodbye” visit.
The marathon, or triathlon, of COVID-19
One of Mahmoud’s pulmonologists, Dr. Chris Winslow (a fellow Evanstonian), likened Mahmoud’s illness and recovery journey to a marathon. Later, Kristin updated this comparison to an even more strenuous Ironman triathlon. COVID-19 brings physical, psychological and emotional challenges for the patient and the patient’s family. The trajectory of illness and recovery are neither predictable nor linear.
Initially while at Glenbrook, before he was transferred to the ICU, Mahmoud would be seemingly “COVID-free” during the day, but at night his fever would spike. His breathing and oxygen levels would seem to improve, then regress. For everyone involved – patient, family and health care providers – it seemed like a roller-coaster ride in the dark.
Kristin and Mahmoud know how lucky they are. Evanston is a caring community where most residents sought out the vaccine. Neighbors comply with mask-wearing and social distancing. The community has access to world-class teaching hospitals and what is often ranked as the best rehabilitation hospital in the country, if not the world.
Mahmoud and Kristin have a tight network of family and friends, some nearby and many more living in Europe and the Middle East. There were dozens of friends who buoyed Kristin and son Xavi with food, encouragement and music during Mahmoud’s lengthy hospital stay. Xavi joked to his mom about the “magic porch” where soup, baked goods, casseroles, cards and letters of encouragement would mysteriously and miraculously appear throughout his father’s illness.
Mahmoud and Kristin shared their story with the RoundTable, fully aware they do so from a position of privilege. Mahmoud has excellent health insurance from his employer, CME Group. The total cost of his care was over $1 million and all except for a few thousand dollars was covered. He was paid his salary throughout his illness. These advantages allowed them the ultimate luxury and psychological freedom of not having to worry about anything else except getting better. It allowed Mahmoud to focus on getting healthy and allowed Kristin to focus on advocating for and supporting her husband.
Rebuilding his strength
Once Mahmoud was able to breathe on his own without mechanical assistance, he was moved out of the ICU to the “step down” unit in Glenbrook. Once he was out of the ICU for five consecutive days, he would be eligible to be transferred to a rehabilitation facility.
He left Glenbrook on June 14, 2020, to the sounds of The Beatles hit, “Here Comes the Sun,” the celebratory tune played whenever a long-time COVID-19 patient is discharged. He was taken directly to the Shirley Ryan AbilityLab where a reserved bed awaited. Now the real work would begin as Mahmoud needed to rebuild his strength in every area – standing, walking, breathing and swallowing.
On July 8, Mahmoud achieved an important milestone: He was able to drink a glass of ice water. In her diary entry on CaringBridge, a website used to keep friends and family current on Mahmoud’s progress, Kristin explained, “Did you know that of all of the things we eat and drink, water is the riskiest? There are over 50 pairs of muscles in our necks that we use to swallow. Those muscles are compromised when a patient is intubated, so Mahmoud has had ‘swallow therapy’ every day for the last month to reclaim his ability to eat and drink. Getting this large glass of ice water this morning was like graduation (but without the cap and gown).”
Now that they are on the other side of this horrific experience, Mahmoud is eager to give back to the organizations and community that helped him and his family. He will tell anyone who will listen about the importance of vaccinations. He met with Shirley Ryan; Dr. Joanne Smith, president and CEO of the AbilityLab; and its board, and has been interviewed numerous times about his experience there. He encourages other patients, especially those who are disheartened, reminding them that he has been where they are. “I am proof: If you do the work, you will improve,” he cheers.
How has COVID-19 changed the couple? For Mahmoud, he does not take anything for granted. Every day is to be enjoyed, every moment and experience to be savored. He is more upbeat and positive, more demonstrative and quicker to say each evening, “Today was a good day.” For Kristin, ever the planner, she learned that some events refuse to conform to logic or a calendar. She is appreciative of science and her community. Most of all, she is thrilled to have Mahmoud home again.
Their 30th wedding anniversary was spent apart, with Mahmoud still on a ventilator and Kristin at home relegated to talking to her husband and best friend via a cellphone held to his ear. They look forward to a delayed celebration later this year.