Province: (ICU stay) - Vancouver BC (2015) Currently residing: Gladstone, MB
In 1999 I was hospitalized and told the infection was in my blood. I remember lots of blood test and IV antibiotics. I was hospitalized for 1 week, my diagnosis was Septicaemia. I was young and had never heard of this and never gave it another thought. In 2009, I was admitted to hospital with low oxygen levels and a bacterial infection, flu combo. I was given large amounts of prednisone and was discharged. The doctor said I could resume life as normal.
In 2012, we were celebrating my daughters 2nd birthday. I had woken up that morning wheezing and a deep cough. I had had a bout of bronchitis a few weeks prior, so I thought it had come back. I somehow managed to get through the day before my lips turned blue and I physically could no longer function. I was taken by ambulance to the ER. I had a severe fever, chills, extreme weakness and I was very confused. Again my oxygen levels were dangerously low and I was admitted for two weeks. Upon discharge, I was told (again) that I had a virus and I needed to let it run its course. Looking back and knowing what I know now, I'm 100% positive I was misdiagnosed. I don't know if I ever recovered from that hospital stay. At this point my GP seemed to focus on my lungs and their capacity. Shortly after discharge, I was seen by a specialist at the respiratory clinic and diagnosed with Stage 3 COPD.
July 2015, I woke up and knew there was something seriously wrong. I was shaking and sweating profusely. I was restless yet so tired, confused, nauseated, aching and agitated. I was so weak I had to be lifted out of bed. I was taken by ambulance to the ER. I don't remember much except there was a camera crew filming ‘real life ER visits’. I remember deliriously thinking, I was going to be the next emergency scene. A physician came to my bed side and asked that I call my husband as he needed to be at the hospital immediately. I don't remember making that call but I'm told I did. My husband was not prepared for what he saw. He had spoken to me less than 30 minutes prior. He watched as I was being hooked up to machines, nurses and doctors working really hard around me. My husband helplessly watched me being resuscitated. I can only imagine witnessing that trauma. Once I was stabilized, I was intubated and put into a induced coma. It was explained I had double pneumonia which quickly progressed to Sepsis and Septic Shock within a few hours. During this visit to the ICU, I needed to be resuscitated 4 more times. I feel extremely fortunate to be here and able to tell my story.
I like to joke that I really must have needed my beauty sleep as woke up in ICU many days later. It's really all a blur yet oddly vivid. I was so confused. I couldn't speak, I tried to move and I couldn't. I opened my eyes and saw my Mom, I tried to tell her I had died but it didn't come out right. My Mom did acknowledge that I was right, but that needed rest.
My experience in ICU was horrific. Illness and infection took over my body. I had to be intubated, tube fed, had multi-organ failure, my blood sugar levels sky rocketed and I had a fever that wouldn't break. I had to be restrained as I kept trying to pull out my breathing tube. I remember desperately trying to speak or maybe even scream but I couldn't. I was in a state of deep confusion and deathly afraid. The memories are so real and crystal clear, it's almost as if I'm watching a movie on repeat. 6 years later, I am still dealing with the trauma I witnessed while in the coma.
I remember laying in the hospital bed wondering why my ears were ringing and people sounded so muffled when speaking. I don't know exactly how long it took me to really srart to feel anything physical but I remember trying to use my legs and I couldn't. My hands, feet and lower legs were numb, tingling and burning. From the minute I could address any pain in my body, I always said my feet hurt. I tried walking and I couldn't. I literally crumbled, I felt so defeated. I slowly started to gain my strength. I had to go to rehab to exercise my lungs. Relearning to walk was extreamly difficult and exhausting. I had no balance and fumbled even using a walker. Little did I know this was just the beginning of the biggest challenges of my life.
The first year post Sepsis I was on 62 different medications, I felt like a zombie but was willing to try anything to help me feel myself. This has yet to happen. I came home a very broken woman. I was broken in every way possible; emotionally, physically, mentally and spiritually. For a long time I felt alone and thought that I was crazy. The new me post septic shock was so different. Upon discharge, no one told me… Nobody told me life as I knew it would be completely different.
Quote from my Husband, Derek N.:
"I wish a Doctor had told my strong, beautiful and resilient wife and I that over coming Sepsis was the first of many hurdles we would go through together. Families of Sepsis survivors need to be educated on how Sepsis can affect a person both physically and mentally upon returning home".
6 years post Septic Shock, I still suffer from Post Sepsis Syndrome. My daily struggles include:
- Fatigue (I schedule my life around my naps.)
- Muscle weakness that give me lack of mobility.
- Feeling breathless from exertion (I do have my good days and for that I am so grateful.)
- Joint pain
- Hair loss (this seems to come and go)
- Extremely dry skin
- My nails (hands and toes) are so thin
- my feet are untouchable
- my sugars sky rockets and are very hard to manage.
- loss of appetite (what I do eat tastes different, things I used to love taste horrible now).
- My eye sight has changed (I now wear glasses).
- I have hearing loss (I now wear hearing aids)
- I still struggle to stand or sit for long periods of time.
- I drop things all the time. Simple tasks such as opening a bottle of water, jars, I'm no longer able to do.
- I was diagnosed in 2017 with PTSD and high levels of anxiety as well as depression.
However, the worst part of my PSS has been how my brain has been affected. My memories have become vague. I don't recall my wedding or the birth of my beautiful daughter. I have trouble retaining information such as names and numbers. My word recall is horrible. I used to be able to talk to anyone, now I'm nervous and shy and always feel I have to explain why I'm slower at discussions or to ask people to be patient with me. I loved emercing my self in books - but I can't now as I have to read each page multiple times to get my mind to comprehend what I'm reading. I struggle with forms and repeat myself.
In 2018, a surgical needle was found in my right foot near my ankle. A surgeon in Winnipeg MB unsuccessfully attempted to retrieve the needle. As I had been over compensating for my right foot, coupled with the diabetes. I was now dealing with ulcers and pressure sores on the bottom of my feet and toes. I have been dealing with wounds on my left foot for approximately 18 months. I have had three contact casts and two walking boots, use a cane and a walker.
It is overwhelming and makes for long and difficult days. When I was discharged from the hospital, I had no idea I had suffered sepsis/septic shock. I have only just learned that the symptoms and complications I have been experiencing are not just happening to me but to so many others who have lived through Sepsis. I found this out by reaching out to other survivors and advocating for myself.
Sepsis is a monster and is life changing. There needs to be better training for Doctors, nurses and other medical professionals on the signs and symptoms of Sepsis, as well as the complications and risks in recovery. There needs to be better preparation and information available for patients and their families at discharged.
I struggle to this day, to make sense of what happened. I have lived with insomnia since my septic shock. I hope my story can help you or a loved one through this journey.