Sitting in the emergency department’s waiting room was not how Paige Ward planned on welcoming in 2012.
Neither did she expect to be curled up on her bedroom floor, barely breathing, four days later.
“I remember I had so much pain up under my ribs I couldn’t take a breath,” she said, recalling the ordeal nearly 15 months later. “I absolutely know I would have died that day.”
Initially diagnosed with a kidney infection on New Year’s Eve, Ward returned to the hospital, this time spending several weeks under care. But it wasn’t until three months after her discharge that she figured out her problem.
After her doctors had ruled out various infections and rare infectious diseases, Ward researched her symptoms – delirium, abdominal distention, white blood cell and platelet counts through the roof – and found they corresponded with septic shock. Her doctors agreed with the diagnosis.
Sepsis, also known as systemic inflammatory response syndrome, is the overwhelming inflammatory reaction the body creates in response to infection. Widespread inflammation causes blood clots, leaky vessels and poor blood flow. In more severe cases it can result in multiple organ failure.
“It is the biggest killer in the world but people don’t know what sepsis is,” said Ward, now an advocate for survivors of sepsis like herself.
For World Sepsis Day on Sept. 13, the 44-year-old will be flying to New York to learn more about the condition that kills 1,400 people worldwide every day. In Canada, about 30,000 people get it every year.
Ward expected to start feeling better after leaving the hospital, but as months rolled by, her condition wasn’t returning to normal. She has since realized that living with sepsis comes with its own struggles.
Last year the former St. Albert resident planned on opening a photography studio. But due to constant pain, physical fatigue and cognitive decline, she had to abandon those dreams – as well as her house in St. Albert – because she could no longer hold down a job.
“I literally cannot go grocery shopping on my own. I can’t pay a bill. I can’t feed myself,” she explained. “If the phone is ringing and I know it’s Ed McMahon with a million dollars and it’s an inch too far and I’m at my worst … I can’t get it.”
Since 2009 a team of 25 researchers from Edmonton, Calgary and Lethbridge have been working to understand the mechanisms of sepsis, the long-term effects and the best drugs to treat it.
The project, called the Alberta Sepsis Network, has come across new developments in sepsis research. These include the identification of several bacteria that cause infection and evidence suggesting that sepsis can result in long-term brain injury, said team lead Dr. Chip Doig, a Calgary-based physician and professor.
Septic encephalopathy – brain injury due to sepsis – was previously thought to be a complication of sepsis but the medical community abandoned the idea 30 years ago, Doig explained. Researchers now believe that brain injury can be one of the lasting effects of sepsis.
“(Septic encephalopathy) might present in the ICU as someone that is delirious or confused,” Doig explained. “In fact, they’re not delirious and confused … but what it might be is that the body’s response is creating a chemical injury to the brain that might actually have long-term consequences.”
Studies have noted that septic encephalopathy may be caused by reduced blood flow and oxygen uptake by the brain, as well as brain swelling. The result ranges from short-term disorientation, to long-term memory loss and disorganized thinking.
Sepsis survivor Beth Makheura of Belvidere, N.J. said noticeable cognitive decline is an aspect of recovery she is still coming to terms with.
“When I see friends they say ‘Wow you look terrific’ and they’re thrilled that you’re better. But I want to scream at them and say ‘I’m not better, I am a wreck.'”
Makheura went in for a routine ulcer surgery in 2009. She contracted necrotizing fasciitis – also known as flesh-eating disease – after her intestines were nicked during the operation. They subsequently became infected and eventually septic.
“I used to be a really smart person and now I’m not,” said the 54-year-old. “I can’t make up my mind and focus … trips to the grocery store take hours. I can’t (count) change. I don’t read, and I used to be an avid reader."
"It’s horrifying and it’s humiliating … when you realize that … I could never have lived the life I had before.”
Like Makheura, whom Ward met on a Facebook group for sepsis survivors, having friends, family and even doctors understand their struggles has been one of the most frustrating parts of recovery. Unlike heart attack and stroke patients, neither left the hospital with follow-up instructions.
"We have very specific well-developed protocols for individuals that might have had a heart attack," acknowledged Doig. "But the same is not the case for patients with sepsis. The system is not set up specifically to think about or deal with the rehabilitation needs of people who have been critically ill in the ICU with sepsis."
Doig believes the signs of sepsis are taught well in medical school, but the condition is a "unique part of medicine" in which the expertise is narrow both in specialty and geography.
Complicated cases can also make sepsis difficult to identify.
"Not everybody who has a fever needs to go immediately to the emergency department and be worried that they have sepsis," he advised. "But there are certain signs that people should look out for."
Signs of sepsis include fever, confusion, blue lips, lack of urination and a petechial rash – inflamed pin-prick spots on the skin that are "exquisitely sensitive.”
Ward and Makheura both hope that one day there will be greater public and medical knowledge of the condition that has forever changed their lives.
“I had reached a point – and it wasn’t depression – it was an awareness (that) there is nothing else for me to do, no one is going to help me,” said Ward. “I am broken and I want my life back.”