By Alexis Steinberg, MD, Neurology Resident, University of Pittsburgh Medical Center
Editor: Michael Reznik, MD, Assistant Professor of Neurology & Neurosurgery, Alpert Medical School, Brown University/Rhode Island Hospital
Ann remembers walking into a hospital in Pittsburgh one day in February 2016, concerned because she had been experiencing unusual left arm and leg sensory changes for several hours. She was 47 years old at the time and had previously never experienced any major medical issues. She didn’t exactly know what to expect, especially after being told she would have to be admitted as an inpatient because her diagnosis was unclear. But the entirety of her stay in the hospital remains a blank in her mind, as she has no recollection of it whatsoever.
The Hospitalization She Doesn’t Remember
Within 12 hours of her hospital admission, Ann acutely decompensated. Her symptoms quickly progressed to tetraplegia, and later that same day she developed respiratory distress requiring intubation, after which she was transferred to the neurointensive care unit (NICU) for further care. Her immediate diagnostic workup included a cervical spine MRI, which showed a T2 hyperintensity and associated restricted diffusion from C2-C5. Further diagnostic workup was suggestive of an auto-immune/inflammatory cause, and she was immediately started on high-dose steroids and plasmapheresis to treat her presumed transverse myelitis.
However, she had a complicated ICU course. On hospital day four, Ann became acutely hypoxic, with steadily increasing requirements in her FiO2 and PEEP in order to maintain her oxygen saturation. Before long, she was on maximum ventilator settings and still had suboptimal oxygenation. She was continuing to worsen without any improvement, and her clinical team even discussed the possibility of ECMO as a rescue therapy. Meanwhile, her abdomen had also become notably distended, with her clinical team and nursing staff noting a startling increase in size over the course of a single day. Severely increased abdominal pressures confirmed the presence of abdominal compartment syndrome, but because of her refractory hypoxia, she was deemed too unstable for transport to receive a CT scan, and even to go to the operating room. The decision was therefore made to perform a bedside exploratory laparotomy in the NICU. Intra-operatively, there was strong evidence of ischemic bowel as the source of Ann’s abdominal compartment syndrome, and the surgery team ultimately had no choice but to resect 188 centimeters of necrotic bowel.
After the surgery, Ann’s respiratory and gastrointestinal status began improving, and she had a gastrostomy tube placed after a period of bowel rest. However, her severe diffuse weakness and sensory deficits persisted, and her neurologic prognosis remained uncertain. Because she still could not breathe on her own, Ann’s family decided to go forward with a tracheostomy, with the hope that she would have a chance to recover some of her function with intense rehabilitation. She required another two weeks in the ICU due to ongoing issues with respiratory secretions, agitation and other medical complications but was eventually discharged to a dedicated inpatient spinal cord rehabilitation unit in early March of that year.
On Memory, God and Dog the Bounty Hunter
When told about the details of her hospital stay, Ann remembers none of them. “My memory of my hospital stay is not actually what really happened to me. I don’t even remember the car ride to the hospital. I have no recollection of getting weak or needing to be intubated. I cannot tell you what happened to me during my time in the ICU.” She does, however, remember experiencing very intense hallucinations. Most notably, she vividly recalls a “very spiritual experience in which [she] talked to God.” But she also remembers hallucinating that she was interacting with various TV show personalities, like Dog the Bounty Hunter. Even though she now knows that these were hallucinations, for some time she believed they were all real events she was truly experiencing. She finds recounting the hallucinations extremely distressing and tries to avoid discussing her memories of the experience because she “feels crazy.” She continues to feel this way despite being reassured that her experiences were not unusual, as many patients develop ICU delirium with associated distortions of reality.
Ann’s daughter, meanwhile, was initially shocked to hear about her mother’s inability to remember her hospitalization, as well as the hallucinations. “I was so surprised afterwards to hear that my mother had no recollection of her time in the ICU,” she says. “The way she looked at me and interacted with me seemed as if she was herself.” Even though Ann could not move her body, her family and her medical team both thought she appeared to be appropriate in her nonverbal communications, was able to follow commands, and frequently appeared to have meaningful interactions with appropriate participation.
Nevertheless, Ann’s daughter found the whole experience unnerving. She was constantly stressed during her mother’s hospitalization, as she did not know if her mother would return to the way she was before. She explains that the doctors were all very empathetic toward her and her father, but none of them could guarantee that her mother would be able to walk again.
On Her Recovery
The first real memory Ann can recall after her ordeal is waking up at her inpatient rehabilitation facility, panicked and frightened because she didn’t know where she was or why she couldn’t move any of her limbs. “That first night was horrible,” she says. “I woke up in a strange place, not knowing where I was and with no family around to explain … [it felt like the] nurses sat with me during that entire night, trying to console me. I am so grateful that they were there with me, as they were able to somewhat calm me down.”
But even after that first day, she continues, “rehab was extremely difficult … and I needed a lot of encouragement from my rehab team in order to do simple tasks.” At first, she required a Hoyer lift to get out of bed, and she would get frustrated with every simple task that she was no longer able to perform, like using the telephone. But though she was dejected at first, she was inspired and motivated by her rehabilitation team, including both her physical therapists and physiatrists. Each day, they would constantly push her, and each day she would find herself accomplishing more than she thought was possible.
During the course of her monthlong stay in her rehabilitation facility, her breathing improved substantially to the point that she was able to breathe well on her own, and she successfully had her tracheostomy removed (though she says having it was never that bothersome to her; toward the end, she was able to properly communicate with the use of a valve). She was also able to pass a swallow evaluation soon afterwards, meaning she could eat on her own, which meant more to her, because she thought having a gastrostomy tube was much more irritating, since she wasn’t allowed to use her mouth to eat and drink. Finally, and to her amazement, she was deemed ready to leave the rehabilitation facility, and was able to return home to her family.
On the After-Effects of Her Illness
One year later, Ann is now able to reliably walk around on her own, albeit with the assistance of a cane. She still has some very mild residual weakness and parasthesias in her arms but is now independent with all her daily activities. Despite her residual physical disability, Ann says the biggest consequence of her illness and prolonged hospitalization is the persistent effect on her memory and thinking. She continues to have cognitive issues and feels that her thinking overall has drastically changed. She also endorses having felt significantly depressed for awhile afterwards, though her mood has dramatically improved over the past year.
However, despite all this, Ann says her horrific experience also had a positive effect on her. The event “changed my entire life,” she says. “My whole outlook on life has changed, and I’m now more positive. I look at my world a lot differently and … am more appreciative of the little things and of God.” She’s also thankful for everything that happened, and would want everything done the same way if her ordeal were to happen all over again. “I would want the exact same treatment because I want to live,” she says. “I would get a trach and PEG again … I would also want the exact same doctors, even though I don’t remember them.”
Despite not remembering her care team, Ann says she cannot thank each person involved in her care enough. She truly feels that she would not be here without them or without everyone who took care of during her ICU admission. And she is immensely appreciative of the people she does remember, namely her rehabilitation team. “I frequently return to [the rehabilitation facility] to visit the entire team who went above and beyond for my care and emotionally supported me through rehab. I like to go back so that I can show my gratitude to everyone.”