Province: (ICU stay) - Vancouver BC (2015)
Currently residing: Gladstone, MB
I was born at 26 weeks in October 1979. I weighed 1 pound at birth and breathed the first 5 days on my own. My lungs never fully developed so I was incubated and intubated until Christmas Day when I was finally able to go home. As a child I was prone to chest infections. When I got a cold that went into my chest, it knocked me down for weeks. As I matured, I always knew I was different as I could never breath properly after any type of exertion. 2009 I was admitted to hospital for severe shortness of breath and my oxygen being in the middle 80 range. Once my oxygen level went to the mid 90's range, I was told I had the flu and was discharged.The doctor said I could resume life as normal. 2012 I was celebrating my daughters 2nd birthday. I had woke up that morning with shortness of breath, wheezing and a deep cough. I somehow managed to get through the day before my lips turned blue an physically could no longer function properly due to fatigue. I was taken by ambulance to the ER. I had a severe fever, chills, extreame weakness and I was very confused.
Again my Oxygen was In the low 80 range. I spent two weeks in hospital. Upon discharge I was told (again) that I had a flu/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 bought. The doctors seemed to focus on my lungs and their capacity. Shortly after discharge I was diagnosed with stage 3 COPD. July of 2015 I woke up to me shaking, sweating perfusley, no energy to the point I had to be lifted out of bed. I knew something wasn't right because of my physical symptoms but also I had patches of discolored skin which was shocking to see. I was restless, yet so tired, I had heart palpitations like never before, my heart was racing, I was confused and agitated. I was taken by ambulance and admitted to the ER. I don't remember much except I was asked to call my husband because I was extreamly sick. I never made that phone call as my blood oxygen level dropped to the 70's and my lungs collapsed.
I like to joke with the Doctors and tell them I really must have needed my beauty sleep. I woke up in ICU in late August. My experience in ICU was horrific. Illness and infection took over my body. Sepsis/Septic shock, pneumonia... I actually still dont know everything that happened health wise! I had to be intubated, tube fed, all my organs failed, my blood sugar levels were sky rocketing, I had a fever that wouldn't break, I must have been a whirlwind of chaos as almost immediately I was restrained. My memories are so vivid, it's almost as if I'm watching a movie on repeat.
Waking up I was so confused. I couldn't speak, I tried to move and I couldn't. I had doctors and nurses coming to me and telling me how sick I was and how lucky I am to be alive. I remember being so thirsty. I was not allowed to drink due to intubation. That was the longest 24 hours of my life. To this day, If I do not have water with me I go into panic mode. The feeling of dehydration comes flooding back. I remember desperately trying to ask for help. I was frozen in fear. I tried to communicate my thoughts that something horrible had happened to me but I couldn't speak. I desperately tried to get a pen and paper but no one seemed to be listening or paying attention to me (only my medical needs were being addressed). I tried to scream that I had been sexually assaulted. I needed to report what had happened. I don't recall when I was able to finally speak, but besides me telling my loved ones that I died multiple times, I told anyone that would listen in my ICU room what I believed happened. The Psychologists I've seen tell me my thoughts are due to heavy sedation. I have those thoughts consume me daily and still feel the events were very real. Doctors tell me I will eventually get over it. 4 years later, I still haven't. I remember laying in the hospital bed wondering why my ears were ringing and people sounded so muffled when speaking. I tried to move my legs and I couldn't. My hands, feet and lower legs were numb, tingling, burning. I tried walking and I couldn't. I was so tired. Slowly, I started to gain my strength. I had to go to rehab and work hard to make my lungs stronger and re-learn to walk. Little did I know this was just the beginning of the biggest challenges of my life.
I left the hospital strong enough to walk with a Walker. The first year post Sepsis I was on 62 different medications!
Following my extended ICU stay, 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 ICU was so different. Upon discharge no one told me life as I knew it would be completely different.
4 years post ICU I still suffer from Post
Sepsis Syndrome. My daily struggles includes:
- 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 rocket and are very hard to manage
- I drop things all the time
- 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
- Simple tasks such as opening a bottle of water, or jars with lids, I'm no longer able to do with ease.
I was diagnosed in 2018 with PTSD and high levels of anxiety as well as depression.
I struggle to this day, to make sense on what happened. I have lived with insomnia since waking up from my ICU nap.
However, the worst part of my PSS is 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 remembering information (names and numbers), I struggle to find words and get them out in keeping with my current conversation, I loved emercing my self in books - but I can't as I have to read each page multiple times to get my mind to comprehend what I just read. Filling out forms is so hard for me to do. I struggle to make complete sentences that make any sence. I repeat myself saying the same things to the same people, over and over again.
It is overwhelming and makes for long and difficult days. When I was discharged from the hospital, I had no idea I had sepsis/septic shock. I have only recently learned the symptoms I'm experiencing is not just happening to me but others who have lived through Sepsis.
Sepsis is a monster. I would never wish this illness upon anyone. Doctors, nurses and other medical professionals need to be educated on the signs and symptoms upon the patients arrival. They also need to prepare the patients (and patients family) upon discharge of what they will be experiencing. Supports need to be put in place for families, friends and the patient.
I hope my story can help you or a loved one through this journey that is sure to be a difficult path to walk.
With love and healing vibes,
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'.