I nearly died of sepsis almost exactly one year ago, starting on May 22, 2020. I want to tell my story especially since I may be among the few people who have lived through severe encephalopathy and survived without incapacitating brain damage. I also want to educate people about the signs of sepsis, and the need for informed consent. Thanks for listening to me.
Even though I am a physician myself and my husband is a professional biologist, we did not recognize the initial signs of sepsis. We should have gone to the hospital right away, as soon as I had severe pain, sleepiness, and confusion; instead, we waited, so by the time I was hospitalized, I had severe sepsis and required crisis medical care. We didn’t know the four simple warning signs (pain, confusion, feelings of dire illness, and fever), and had postponed treatment.
On Saturday, May 23, I suddenly became irresistibly sleepy. I slept all day. Sunday was similar, only worse: I could not keep my eyes open, had severe back pain and no appetite. I apparently tried to make an espresso by pouring milk in the coffee machine. My speech became incoherent; by Monday morning, I was obviously very sick and delirious, so my husband took me to the Emergency Room.
Within a few minutes of arrival, I was declared “Code Sepsis,” which meant a lot of things happened at once. Thank you, Sepsis Alliance! Each body fluid was cultured, except for a spinal tap, plus I had chest films, MRI and CT scans. I could not stop coughing; although Covid-19 was quickly ruled out, along with many other common viruses, the chest x-ray showed cloudy infiltrates in both lungs. My urine was cloudy and grew out a common form of staphylococcus bacteria, not normally alarming in itself, but which led to a diagnosis of a urinary tract infection (UTI) that precipitated a sepsis cascade. (Sepsis and Bacterial Infections, Sepsis and Urinary Tract Infections) I started going into kidney failure, which pointed to multi organ dysfunction syndrome (MODS). My white blood cell count and C reactive protein were all high, compatible with SIRS: severe immune reaction syndrome, a component of sepsis. Before the lab results were back, the hospitalist doctors had started me on IV fluids, broad spectrum antibiotics, oxygen, and anti-inflammatory medicines. I feel extra gratitude to the physicians who did not sedate me, which would have increased the chance of permanent brain damage. The hospitalists wrote in my chart that I had severe sepsis with MODS and SIRS, but we only learned those acronyms after I got home and downloaded 267 pages of my medical records.
I am told that I was combative and uncooperative. At one point I was unresponsive to deep sternal pressure, made no verbal responses and my eyes were shut tight, which means I had a Gaslow Coma scale of 3, as bad as you can get. I fought the IV lines and was a monster patient, leaking unspeakable fluids from every orifice and coughing and gagging at the same time. My husband was not told I had sepsis. He was told I had a complex urinary tract infection, and to go home, rest, and take care of our farm animals. I would be be just fine. The language was patronizing: “little old ladies can get a bit confused with urinary tract infections.” Meanwhile, the chart said I had severe sepsis and a 50-50 chance of survival.
I lost Monday. By Tuesday afternoon, I started to wake up somewhat but still could not control my bowels or bladder, and was too weak to roll over and find the phone or call button. By Wednesday morning I was still incontinent and covered with bruises. The building seemed to sway and I had visual hallucinations. (Sepsis and Hallucinations) Due to COVID restrictions, my husband was not allowed to visit, so I was alone except for nurses, and because I couldn’t figure out how to work my iPhone, we did not use FaceTime. I learned later that some idiotic nurse had told my husband to discourage people from calling me, so I was frighteningly alone. He had made a special trip to the hospital to give me my iPhone, but nobody thought to show me how to use it. The wall clock seemed to go at different speeds, and to have a dozen hands, not two. Eating or drinking were impossible. I was terrified, ashamed, embarrassed and in pain from a headache, the IVs, and urinary pain. Mired in a cesspool, my bottom developed a severe fungal infection, a diaper rash without diapers, that burned like crazy.
I thought I was in North Carolina, where I had attended medical school. Like ET, I just wanted to phone home but couldn’t figure out how. Vivid hallucinations were nonstop. A painting on the wall showed a repetitive movie, over and over. I was too tired and confused to watch TV, watched the painting which was just as colorful.
I was especially frightened by a patient telemonitor that looked like a large one-eyed goose. If I tried to sit up, it honked at me, “Lie Down!” When I tried to put my feet on the floor, it ordered “Do Not Get Out Of Bed!” I did not understand who was watching me or why. At one point, I simply had to go to the toilet, so I ignored the bossy goose. As I staggered to the bathroom, all sorts of bells and whistles went off and half a dozen nurses appeared.
The sun came out Wednesday evening and I finally knew where I was, although I still did not recall how to use my phone. The silence from my family grew louder. I thought I had done something terribly wrong. But gradually my mental state cleared. By Thursday morning I walked all the way around the ward with a walker, which meant speedy discharge because they wanted me out ASAP due to the COVID risk. At that time, the ward was prepared for a COVID surge, but I was the only patient and did not have COVID. I went home in a hospital robe and socks. Home seemed vaguely familiar. My normal brain has a very good GPS. I can find my way around Amsterdam or Paris having been there only once or twice, but after sepsis, I could barely find my way around our house. I could not eat and could not imagine doing so. Nobody provided my husband with home care advice.
Uncertainty was miserable. I did not know what had gone wrong. Clearly, the story that I simply had a complex urinary tract infection was a silly oversimplification; actually, a misrepresentation. The real story was that I had classical sepsis: a wide-ranging war within my body, cells against cells: SIRS with MODS. It is likely that a bacterial urinary tract infection triggered sepsis because I got well within 6 days. Tiny chemicals called cytokines had become a raging storm, which happens with bacterial or viral sepsis, and fancy inflammatory proteins called interleukins sent out conflicting signals, so white cells went to war with other white cells. My capillaries leaked, so my legs were swollen and purple. In addition, my poor veins retreated. The only way to insert an IV or take blood was under ultrasound guidance, like a premature baby.
But I had dodged several bullets: I did not get COVID-19. I did not develop blood coagulation problems, which can necessitate amputations. Although I initially had signs of pneumonia, I did not develop progressive pneumonia or require a ventilator. For about 9 months I suffered from PTSD with recurrent nightmares, profuse anxiety, and hyperarousal. (Sepsis and Post-Traumatic Stress Disorder) I enrolled in a serious Buddhist program, including meditation, and sought therapy with a trauma specialist. A year later, I am back to my old self, kind of high strung but pretty happy. I can read and ride my horses, train my dogs, knit, and play the harpsichord. Life is good again, but it was a near miss.
I’m grateful to be alive, grateful to the doctors who did the right thing in treating me — although they failed to inform me or my husband about the proper words for my medical condition. Even as we all hope for more effective treatments in the future, one thing that can and should be achieved right away is better communication, not only among medical professionals but also to the patients and their families. People at the Sepsis Alliance were helpful from the moment I found their web site and made a few friends. I am especially grateful to Roshi Joan Halifax, of the Upaya Institute, who welcomed me into the Sangha, and to my therapist with her fluffy hair and astounding hats. Finally, my husband David Barash has been the workhorse and hero, from changing my diapers to helping edit this essay. Thank you, all.