Ahmed Raoof's road to recovery
Ahmed Raoof is sitting up on his bed in Community Hospital’s William R. Lewis, MD, Inpatient Rehabilitation Unit (IRU), picking out a few chords on his guitar. A beginning guitarist, he’s marveling, not at the quality of his music but that he can play the instrument at all. In April 2021, his body was fully paralyzed.
"All I could move ," he says, "was my head. I could feel a touch but not pain. I could not move my fingers or toes. I was so scared."
Raoof, 47, who has taught Arabic in cities and states across the country, moved to the Peninsula from Kansas in October 2019, to begin an assistant professorship at the Defense Language Institute in Monterey. The advent of the pandemic postponed the move for his wife, Tara, and their four daughters, until they could be vaccinated.
In March 2021, he started to feel intermittent electrical shocks in his legs, followed by numbness. Once the numbness had moved into his back and shoulders, Raoof went to the Emergency department at Community Hospital. He was given medication for back strain and sent home. That seemed reasonable to him, until a day later, when he couldn’t step into the shower, raise his arms to put on a shirt, lift his laptop.
Raoof returned to the Emergency, where a neurologist ordered an MRI and a battery of other tests, including an electromyography, a form of electrodiagnostic testing used to study nerve and muscle function. Her initial diagnosis was Guillain-Barré syndrome. Subsequently, after more testing over the course of his stay, he was diagnosed with chronic inflammatory demyelinating polyneuropathy, a rare disorder in which the body's immune system attacks the nervous system.
Raoof was admitted into the Emergency. By nightfall, he could no longer walk. By April 8, he was paralyzed.
After a few days of medical care, Ahmed Raoof began to recover the use of his arms and hands, and then his legs and feet. He was transferred to the IRU, where he began his rehabilitation therapy.
I was so excited, I called my family and my work, and told them I would undergo three to four weeks of therapy for a full recovery. I began my program, weak at first, but I started to improve.
Three days later, Raoof awoke with his fingers curled and, once again, unable to move.
“My doctor had prepared me that there could be a relapse,” he says. “I was moved back into the hospital. My immune system was on the attack again, this time affecting my lungs. I had difficulty breathing and swallowing; I couldn’t eat.”
Raoof was moved to the ICU, where he was intubated and provided breathing assistance.
“For two weeks,” he says, “I couldn’t eat, couldn’t talk, couldn’t express myself. It was so scary for me and for my wife. I can’t tell you how much I was tortured because I couldn’t see my children.”
Raoof’s wife, Tara, and their daughters, ages 20, 18, 14, and 5, made a blanket for him, printed with family photos and the words, “We love you, Baba.”
“My wife works with kids with special needs,” he says. “Suddenly, she had to take on all the needs of our family as well. Yet she never missed a day to come see me, support me, encourage me, and give me a push. I couldn’t have gone through this without her.”
After two months in the ICU, first intubated and then requiring a tracheostomy due to paralysis, Raoof began to improve.
“I went through a lot of dark, lonely nights,” he says, “in pain, on medication, feeling sensations then no sensations. My wife was always telling me to breathe, not to give up. ‘Do your best, work hard, let’s get you out of here,’ she said.”
Ultimately, Raoof underwent plasma exchange therapy, which removed and replaced his blood plasma, with the intention that any remaining antibodies would be eliminated.
“During three sessions, they exchanged my blood,” he says, “which was a long and painful process. But the thing is, I started to get better, started to move my hands and feet. Imagine that they could do such a thing.”
After two months, Raoof was returned to the IRU for therapy. His tracheostomy tube was removed, enabling him to speak and breathe on his own.
I worked so hard to be able to breathe. I also was able to eat, starting with soft food. Applesauce for me was like steak, it was so good. .
Ahmed Raoof had lost 55 pounds, but he was recovering and feeling better. His older daughters rotated visits with their dad.
“Two days later,” he says, “my lungs stopped working, my heartrate plummeted, and I was about to die. People were running. They returned me to the ICU and intubated me. I woke up with a tube in my throat and thought, ‘I can’t do this again.’ I thought of my family, and I worked so hard to get better.” Once Raoof was medically stable again, he was ready to take on the long and arduous road to recovery.
Road to recovery
Ultimately, his medications worked. By July 6, he was stable. He returned to the IRU, where he began to recover.
“The Guillain-Barre syndrome is shifting from acute to chronic (chronic inflammatory demyelinating polyneuropathy). I am making progress,” he says, “working hard to rebuild my muscles and walk with a cane. I am eating well, seeing my daughters again, and learning to play the guitar. While I have my wonderful family, I know the staff at Community Hospital is also my family.”
Raoof is now able to walk to the hospital cafeteria, escorted by a nurse, to get coffee. Along the way, he is routinely stopped by hospital staff, cheering, waving, greeting him in celebration of his progress.
“Sometimes things happen in life,” he says, “which we can’t imagine or control. I feel so fortunate to be in this hospital and am so thankful for everyone who has helped me recover. It’s taken the whole hospital village, and I have never felt a stranger here.”