Have you ever felt gaslit by medical professionals? Have you gone to an appointment prepared to discuss your symptoms only to be laughed out of the office? Me too!!!
More than once, I’ve left a doctor’s appointment in tears. In fact, one doctor told me I should have been an actor instead of a singer. Another brought in a witness to tell me he would no longer be my doctor. The prize for the Doctor I should have reported goes to the guy who told me to shut the fuck up during a colonoscopy. I was screaming in pain because my IV had gone interstitial and I wasn’t receiving the pain meds. I’ll never do a colonoscopy again, so the FIT tests will have to do.
The Doctor I should have reported. There lies the issue. I already had 2 Gastroenterologists quit me and I was scared to lose another. There is retribution when you speak up against the doctors with the God complex.
Surviving Sepsis
When you’re a sepsis survivor, you’re recovering from an emergent syndrome that affects your entire body. It creates blood clots throughout your cardiovascular system. Your hair falls out, your fingernails fall off, and the brain fog is incredible. So why are survivors treated so badly?
My guess is a mixture of ego and lack of education in this area. How many of you have Post-Sepsis Syndrome on your health record? I rarely have sepsis on my charts, yet I’ve had it 3 times. Misdiagnosed sepsis is unfortunately very common.
Call it SEPSIS!!!
What we need is sepsis to be diagnosed as it is. CALL IT SEPSIS!!! Everyone who died from COVID-19 died from sepsis.
Sepsis does not get coded enough. It’s been the norm to describe death due to diabetic gangrene, ruptured appendix, staph infection from a hangnail, and so on…. Now we need to chart death from COVID-19 and sepsis.
All the survivors of COVID-19 are now seeking disability for Long COVID. How can they receive benefits if sepsis is not recorded in their health records? The same goes for survivors of sepsis from other sources. We need the word sepsis in our records.
Post-Sepsis Syndrome
The Sepsis Alliance does amazing work! One sleepless night due to uncontrollable pain, I was conferring with Dr. Google and came upon their page on Post-Sepsis Syndrome. This is me!!!
“Post-sepsis syndrome (PSS) is a condition that affects up to 50% of sepsis survivors. It includes physical and/or psychological long-term effects, such as:
Physical –
- Difficulty sleeping, either difficulty getting to sleep or staying asleep
- Fatigue, lethargy
- Shortness of breath, difficulty breathing
- Disabling muscle or joint pain
- Swelling in the limbs
- Repeat infections, particularly in the first few weeks and months following the initial bout of sepsis
- Poor appetite
- Reduced organ function, eg kidney, liver, heart
- Hair loss
- Skin rash
Psychological or emotional –
- Hallucinations
- Panic attacks
- Flashbacks
- Nightmares
- Decreased cognitive (mental) functioning
- Loss of self-esteem
- Depression
- Mood swings
- Difficulty concentrating
- Memory loss
- Post-traumatic stress disorder (PTSD)
I am 1 in 2!
Diagnosing Sepsis?
It wasn’t until my 3rd infection from the flu that the medical community got it right. Up until this point, it was my fault that my appendix ruptured and I developed peritonitis because the ER sent me home with a gastritis diagnosis. On my 2nd infection, I was psychosomatic for having liver enzymes in the 1000s after an ERCP for sludge in my common bile duct. Apparently, I was just looking for attention. And I was. I wanted a proper diagnosis. I even got in trouble for trying to look at my chart because I had some medical knowledge. Note to self, head to the bathroom with the chart next time.
The 3rd infection was the best infection. I had a student team and I swear my Doctor rarely left my side. This time sepsis was caused by the flu. I can only imagine how sick I could’ve been or if I’d even be here if I wasn’t up to date on my vaccinations.
However, there was 1 SNAFU. I was made to fill out a drug and alcohol usage survey. I happily obliged, but how was that relevant? It wasn’t. I was racialized for being Indigenous.
How do we Make it Better?
So, why is our medical community not up to speed on sepsis? Because it wasn’t until 2017 that the WHO made sepsis a global health threat. Their initiatives are:
- develop WHO guidelines on the clinical management of sepsis and on the prevention of bloodstream infections;
- draw attention to public health impacts of sepsis and estimate the global burden of sepsis;
- support Member States to define and implement standards and establish guidelines, infrastructure, laboratory capacity, strategies, and tools for identifying, reducing the incidence of, and morbidity and mortality due to sepsis; and
- collaborate with UN organizations, partners, international organizations, and stakeholders to enhance sepsis treatment and infection prevention and control including vaccinations.
I was training to be a nurse in the 90s and we didn’t do a module on sepsis. So this is exactly where change should begin; in the medical, nursing, and paramedic schools.
Let’s Get Loud
The Americans have code Z51.A to identify sepsis survivors, so when they return with their next infection, they can save TIME.
We also need to get political. Write your Government official and ask them to recognize World Sepsis Day, September 13th, and make sepsis standards and education a priority for their office.
This will get the dollars in the hands of our Scientists to study sepsis and make breakthroughs that could potentially save the 11 million people globally who die from sepsis each year. In Canada, donate here: https://www.canadiansepsisfoundation.ca/donate
Your voice matters so get involved. Share your story, join the support groups, and get involved in research as a Patient Partner like me. In Canada, apply here: https://www.sepsiscanada.ca/training-programs
It’s time for us to GET LOUD!!!
