SEPSIS IS KNOWN TO OFTEN BE A DEADLY CONDITION — AND SUFFERERS WERE TOLD TO JUST BE GLAD THEY SURVIVED. BUT FOR ONE WOMAN, WHOSE LIFE HAS BEEN PERMANENTLY CHANGED, THAT’S NOT GOOD ENOUGH.
EFFECTS OF POST-SEPSIS SYNDROME CAN LAST LONG AFTER A PATIENT LEAVES ICU
Rose Stinson was 10 weeks pregnant with twins when she came down with a fever. She went to an emergency room in Mississauga, Ont., where she was given antibiotics for a urinary tract infection and sent home. The next day, she returned to the hospital, where she almost died. She spent three days in the ICU and lost both babies.
Stinson’s medical records state that she had sepsis, a life-threatening medical complication caused by an infection. As the body tries to fight off invading germs, the immune system begins to attack itself, causing tissue damage and organ failure.
Stinson survived, but four years later she is still suffering. She used to run marathons, but she just got approved for an electric wheelchair because the lingering effects of sepsis have left her too weak to walk long distances. She can’t even make it to the end of her street without feeling like she might collapse.
“I always feel like I’m borrowing time and energy from tomorrow because I’m just always so exhausted,” Stinson said.
“I can’t take care of my son on my own. I’m alive but I’m not living the life that I used to have.”
Stinson has post-sepsis syndrome, a debilitating, yet oft-misunderstood illness that persists long after a patient has left the ICU.
She suffers from extreme fatigue, chronic muscle pain, memory loss, anxiety and depression. Before contracting what is considered a routine infection, she worked as a supervisor of sales and administration. Now, she doubts she’ll ever be able to return to work. She can barely take care of her five-yearold son.
Dr. Hallie Prescott, a critical care doctor and sepsis researcher at the University of Michigan, said many survivors suffer moderate to severe cognitive impairment. These symptoms are likely a result of the immune system not returning to normal after sepsis, she said.
“Millions of people now survive sepsis, but we know that a huge number of these people will go on to have long-term problems,” Prescott said. “Most sepsis survivors will tell you they’re just never quite right again.”
According to Statistics Canada, sepsis kills more than 10,000 Canadians every year. (This is likely an underestimate, as the initial infection is often recorded as the cause of death.)
While organizations like Sepsis Alliance have raised awareness in recent years about how to recognize and treat the syndrome, less
attention has been paid to survivors — people like Stinson who struggle with post-sepsis symptoms for months or years.
Medical professionals have been slow to recognize post-sepsis syndrome and no sepsis-specific followup care exists in Canada.
Dr. John Marshall, a professor of surgery at the University of Toronto, described followup care for anyone who has been in the ICU as “haphazard.”
“There isn’t a structured, well-thought-out process that considers what the particular problems a patient is going to have after their illness and what expertise can be brought to them,” he said.
Marshall said people who have sepsis but never end up in the ICU probably have even worse followup care due to an “erroneous” assumption their experience wasn’t severe enough to require it. He said one of the main reasons for no sepsis followup is that physicians still aren’t sure exactly what causes post-sepsis syndrome or how it manifests itself in the long term. And while other diseases, like cancer, have specialists, no “sepsis specialists” exist in Canadian hospitals.
Marshall has reviewed Stinson’s case, and described her symptoms as “striking” and “dramatic” and certainly related to the sepsis she endured. But Stinson said he’s one of the few people who have taken her seriously. In 2017 — three years after she survived sepsis — she averaged one doctor appointment a week. Since then, her symptoms have barely improved.
“I’ve been told over and over again that it’s all just in my head, or that it’s just depression, but I was a fully functioning person before the sepsis happened,” she said.
Dr. Chip Doig is the head of adult critical care medicine in the Calgary zone of Alberta Health Services. He said it’s difficult to offer patients advice on how to get better after being critically ill because there aren’t many specific places he can refer them to for help.
“(In the future) there needs to be a multidisciplinary team, including psychologists and therapists, to help people recover,” he said. “It’s also important that we have an evidence base before we add these new services, so we need research to prove that followup makes a difference.”
Prescott said the longstanding notion after being critically ill with something like sepsis is that if you survive, you’re lucky, and you should be grateful.
Stinson refuses to accept this. The idea that a common syndrome could ruin the rest of her life is too much to bear. “I won’t stop trying to find help,” she said. “Because I can’t imagine living like this for the rest of my life.”
I’M ALIVE BUT I’M NOT LIVING THE LIFE THAT I USED TO HAVE.