“I survived a hat-trick of sepsis infections.”

It started with a ruptured appendix in 2011. I'd just started a new job and didn’t want to call in sick, so I went to work — then I collapsed from septic shock. 

The appendicitis started on Saturday night at a dinner party. I felt violently ill & thought I had food poisoning. I spent the night on the floor in our bathroom. When I finally went to bed, I could barely stand up straight because of the belly pain. Even when I got into bed, I assumed the fetal position. My husband took me to the ER on Sunday where I was diagnosed with the flu. 

Monday, I went back to work. I was ashen grey. Tuesday, my appendix ruptured in the afternoon. In hindsight, I felt momentarily better and thought the worst was over. Wednesday, I remember calling my husband. I told him I felt like I would pass out soon. He told me to tell my boss, who finally took me to the hospital around 11am.

The triage nurse instantly took me seriously. The problem was I had no fever and my blood work was fine. At least I was on a morphine drip.

As the triage nurse ended her shift and got ready to leave, she noticed I was still sitting in the ER. She seemed shocked to see me there and immediately notified the doctor. When they finally looked at my CT, the team couldn’t tell if my appendix or right ovary had ruptured. They were just excited to have a surgical case and 30 minutes later I was on an OR table.

I never really recovered, and next went my gallbladder two years later, in 2013. By this point, we had turned to Naturopathy, and after receiving an intravenous vitamin cocktail, I started having seizures and vomiting on December 23. I bee-lined to the hospital. This time it was sludge in my common bile duct, and I was treated with an ERCP. I was discharged on December 27, but returned the next day with sepsis. I was so weak I could barely stand up, and I had a fever. I spent 18 days over Christmas and New Years, mostly in the hospital hallway. That was a tough one.

I had read that once you get sepsis, your chances of getting it again are increased.

That beast laid in wait until July 12, 2019. It manifested alongside kidney stones, and I was screaming in pain with an elevated temperature. I had so many doctors, imaging, blood tests, trying to find the source of this episode.

I feel so full of gratitude. Somehow, I gained enough strength to tour, perform, & even received a Nomination for a Juno Award in 2018. I got to live out my best life after and while circling the drain, three times.

I am 51 on a geriatric diet, but sometimes I can still sing my heart out. Life is silent these days as I am currently on Day 2247 of soul-sucking migraine. Is it related to Post-Sepsis Syndrome? Possibly. I struggle with PTSD, anxiety, depression, insomnia, fatigue, poor appetite, and I have an eagle eye for the next organ dysfunction.

I don’t know why I’ve been spared three times now, but I have this unwavering sense that I’m meant to do more. This led me to applying for the Sepsis Canada LiFTING Program. As a patient partner, I can say the patient perspective has never been more valued than it is today. My lived experience of sepsis and 13 years of recovery is the piece of the sepsis puzzle that the medical community does not understand or know much about.

When you leave the hospital, the doctors say, “congratulations, we saved your life.” They don’t see the years of struggle spent adapting to post-sepsis life. There is no "how to live post-sepsis" handbook. I had to figure it out on my own. That's how the learning bug got me. I needed to understand what happened to me.

Now a graduate, I sit on four committees and am part of two CIHR-funded research projects. I’m awaiting funding on three more that I’ve committed to. This is my purpose now. I am lucky enough to have survived and now have the opportunity to make positive change in the field of sepsis.

I've recently joined the research team of Dr. Claudia dos Santos, Critical Care Clinician and Scientist at St. Michael’s Hospital. Her research could have worldwide implications. Sepsis is so deadly because it has so many sources of infection, therefore there is no one-size-fits-all treatment. Enter Dr. Claudia dos Santos and Dr. Amin Ektesabi who have developed a new treatment to block inflammation, supercharge white blood cells’ ability to kill bacteria, and protect against heart and lung failure. Now they want to test it in pre-clinical trials — so they can move quickly to save lives. This research, when implemented, will save lives and increase the quality of life for all sepsis survivors.

As for me, I’ve learned to trust my intuition and my “go time” symptoms. The survival instinct is strong and will keep you here, if you listen.

PS: Don’t be afraid to ask, "could it be sepsis?”
 

Shannon McKenney is a patient partner with the Sepsis Canada LiFTING Program.