Ray Schachter is a lawyer in Vancouver. He is on the Executive Committee of the Global Sepsis Alliance and Canadian Sepsis Foundation
In March 1996, I was a healthy, fit 50-year-old man enjoying life with a young family. A month later, I was in an induced coma fighting for my life against acute septic shock accompanied by severe adult respiratory distress syndrome (ARDS) and multi-joint and -organ dysfunction which frequently accompanies sepsis. My sepsis was brought on by Group A Streptococcus (Strep A) in my bloodstream which compromised almost all my joints.
My trajectory which led to acute sepsis is not unusual. On Day 1, I had a very severe, but short-lived, bout of extremely high fever (40.5 degrees Celsius), followed by excruciating hip pain the following day.
By Day 3, the hip pain had become unbearable. That evening, we called my family doctor’s on-call service and a doctor came to the house at midnight. The physician felt my condition was osteoarthritis and prescribed anti-inflammatories.
On Day 4, my wife became so concerned that she called a doctor who was a family friend. This doctor requested ambulance service to take me to the emergency department at the local hospital, with a preliminary view that I was suffering from sepsis. I wasn’t feeling well enough, however, to persuade the emergency physician that something very serious and unusual was happening to me and, like many people, assumed I would get better. The emergency physician sent me home with a prescription for stronger anti-inflammatories for the hip pain.
I didn’t get better.
On Days 5 and 6, my condition steadily deteriorated until my wife called 911 for an ambulance. The paramedics who came to our home convinced my wife that there was no reason for me to return to the emergency department since I’d already been assessed there. So, I stayed at home.
On Day 7, my wife, frantic with worry, talked about me to her family doctor who ordered blood tests which had to be taken at my home the following day as I was not mobile.
On the 8th day, two things happened which saved my life. First, my wife saw the results of the blood tests and recognized that I was “off the chart”. She took immediate action contacting family and a good friend whose husband was a world-renowned internal medicine physician (then travelling in Europe)—and called an ambulance.
Second, I became totally confused and disoriented, and made no sense, speaking about spiritual advisors (definitely totally abnormal). It was no longer in doubt that I was very, very sick. (In retrospect, these symptoms were from ARDS. My oxygen level was so low that it could not be measured when I finally arrived at the emergency department.)
When the ambulance arrived at my home, I was so ill that the crew had to carry me by gurney. And when I was assessed at my local hospital, my physical condition was so dire that I was put into an induced coma. My friend, the internal medicine physician, returning from Europe, came directly from the airport to the hospital and insisted that I be moved to the best tertiary care hospital in the province, despite opposition from the staff that moving me was very dangerous given how sick I was. After 11 days in a coma, I was slowly awakened and found to my confusion and astonishment that I was in an intensive care unit, ventilated and heavily drugged. I had no memory of my admission to hospital or being treated with heavy-duty antibiotics, fluids and other interventions.
I remained in hospital on a general ward for almost 3 more weeks. I had lost about 15% of body weight and was in a wheelchair—and I was told that my right hip had been destroyed. Fortunately, with the intervention of my wife and family, I was able to access multiple levels of rehabilitation, both before and after my two hip surgeries. Unfortunately, the health care system ends on discharge from hospital for many patients who don’t have strong advocates, as I did.
I am now a person with multiple health problems, and chronic persistent pain and fatigue. Since my discharge, I have had four hip operations (three replacements/revisions and one resurfacing) and am now facing back surgery. My right hip was destroyed by the Strep A infection and sepsis. The causes of the rest of my symptoms are unknown, but the journey from a healthy fit person to who I am now is not what I signed up for.
The personal costs of my sepsis included an 18-month recovery during which I needed special care from many doctors, nurses, aides and physiotherapists (including 12 months on crutches), absence from work, emotional turmoil and continuing symptoms of fatigue (common to recovering sepsis survivors). It is not possible to quantify the effects on my wife, my 5-year-old son and my two daughters of 12 and 18 (at the time), plus an aging father.
My story is not unusual, sadly. My outcome is a matter of both bad luck and good luck. Certainly a missed diagnosis at several stages. But also, my wife’s intuition that something was seriously wrong; intervention by good friend/senior physician so that I was moved to a tertiary health centre with expertise in sepsis; and an Intensivist who said to my wife, “I have seen sicker patients survive” rather than “prepare for the worst.”
You cannot anticipate the onset of Strep A infection and it is often a mystery. However, the events which resulted in my infection progressing to sepsis could have been avoided.
After going through this trauma, my family now knows that if a healthy person suddenly says that he or she is sicker than ever before, that things are not “right,” they must take action immediately and advocate with the medical system, from triage in the emergency department to full treatment.
My family now knows the symptoms of sepsis. My family now knows that every hour sepsis is left untreated, leads to substantially higher mortality. My family has resources and will use them. But my family is an exception.
Since 2013, I have been on the executive of the Global Sepsis Alliance which is based in Germany. Critical care specialists from around the world and many others contribute to the work of the Alliance which is to advocate and disseminate information on sepsis and its treatment.
As a result of the efforts of Global Sepsis Alliance and other organizations with an interest in sepsis, primarily in mid-to-high income countries, protocols have been established for diagnosing and treating sepsis. This has resulted, for those countries (which includes Canada), in lower mortality rates and better outcomes for survivors.
This year, the World Health Assembly adopted a resolution to fight sepsis after years of lobbying and hard work of the GSA.
What have I learned about sepsis through my experiences?
- Early diagnosis and treatment is essential. It is a miracle that I survived given that every hour sepsis remains undiagnosed and untreated leads to significantly higher mortality rates
- The public must be educated about sepsis and overcome the difficulties of getting assistance from overburdened medical professionals.
- All health professionals should be educated to understand the severe and often fatal consequences of failure to identify sepsis.
- Protocols in hospitals and other medical facilities are there for an important reason and must be understood and followed.
- Survivors have sequelae which are just being studied, including ongoing physical symptoms and cognitive impairment.
- Survivors (as in my case) often spend a long time in the intensive care unit, followed by lengthy recoveries made more difficult because of permanent impairment, such as loss of limbs or, in my case, multiple hip operations. We call this the burden of disease.
- Equally important is the impact of sepsis and either death or recovery of the patient on the family. In my case, my wife and children, extended family and friends were affected. This too must be factored into the burden of sepsis.
For stories of others who have been affected by sepsis, such as survivors, family members, ambassadors):
- 2016 World Sepsis Congress webinar (http://www.worldsepsiscongress.org/session3)
- Global Sepsis Alliance website (https://www.global-sepsis-alliance.org/)
I, too, have a sepsis/septic shock story to tell. But it’s not about the medical condition that quickly brought sepsis on, or the hospital ICU stay that followed. I remember none of that as I was in a coma.
Rather, my story is really a plea for greater education, for health professionals, for patients and for their families following the septic event.
My hospital discharge summary listed the serious medical conditions that hospitalized me. They were totally unexpected as I had previously been very healthy.
But my discharge summary never mentioned sepsis — and my poor family, who had watched me very nearly die, said later that they were never told I had sepsis. Additionally my doctors, during follow-up visits, never mentioned sepsis.
So I had no idea why in the following months I couldn’t seem to recover. I had terrific joint pain, “pins and needles” neuropathy in my hands. I was mentally foggy and had no energy. Like none. Something as simple as vacuuming my living room carpet was a monumental task.
Plus I suffered insomnia and was depressed. Why couldn’t I recover, I kept asking myself. Finally I decided it must be because I was weak-willed. That just deepened my depression!
A turning point came when I requested my hospital records…I was curious to know what had happened to me.
There for the first time I found my “primary diagnosis” — severe sepsis/septic shock.
I immediately began online researching sepsis. Now everything made sense. I was suffering the after-effects of sepsis! I wasn’t weak-willed. I was still sick — way longer than I ever anticipated.
Now I’m trying to get the word out that if patients are to make a healthy recovery they need several educational tools.
First, their discharge paperwork must be complete. They must be told in writing they have sepsis. (Simply telling them orally is no guarantee they’ll remember it.)
Second, they must be told in writing what the possible after-effects are, told what treatments might be needed, and given a general timeline for sepsis recovery.
Third, their family members must also receive printed information specifically related to recovery and the role family and friends may play. My poor family went through so much; it would have eased their minds if they’d known what to expect. They didn’t. Not until eventually I stumbled upon information about post-sepsis syndrome.
Being discharged from the hospital isn’t the end of a sepsis journey. It’s the start of what can be a long sepsis recovery. Hopefully more medical professionals will get on board to make this journey as positive as possible.
Thank you for your post.
In October 2018, I left work feeling cold and very ill. I spent four days in bed and couldn’t eat. My husband tried to get me to a doctor but I felt too ill. On the 4th day he forced me to see the doctor who found my oxygen saturation was 68%. He sent me to the hospital. They admitted me immediately, discovered double pneumonia and sent me via ambulance to a high care hospital. They didn’t know if the ambulance could carry enough oxygen for me as my 02 levels were so low.
I recall coughing and looking into a tissue covered in bright red blood.
I arrived and went code blue immediately and was moved to ICU. Within 10 minutes I was told if I didn’t accept the induced coma I wouldn’t survive. I don’t remember much else, except for waking 12 days later with peeling skin and unable to move. I had to learn to walk again.
I was 52 at the time and this was a result of Influenza A. I recovered very quickly, but over 12 months later I still have burning feet and hands, oedema and lower limb weakness plus terrible fatigue. I am back at work full time and can only thank the ICU doctors for saving my life.
It has taken a terrible toll on my family. I was not immunocompromised and in good heath prior to this event. Septic shock is a dreadful condition and I wish there was more research into post septic recovery.
I was diagnosed several years ago with diverticuloses, and followed a special diet for 3 years, with several diverticulitis atacks. I was hospitalized in Nov/Dec 2018 for 10 days. I was rehospitalized in January 2019 for another 10 days with IV feeding and anibiotics, then at the beginning of Feb. 2019 I got really ill again and was even unable to make an airplain trip to Hospital. My doctor at the time questioned my symptoms and sent a helicopter to get me. I was operated the same day and then put into an induced coma because I aquired sepsis. I spent the next month in two hospital ICU departments and another 2 weeks in intermediate care after I was awakend from the coma. It has now been 8 months since operation, have a colostomy, a hernia where my belly button used to be, and severe pain in all my joints, kind of like having broken glass or sand paper in them. The dreams and nightmares from the ICU are frightening. I died twice and was sent to Heaven twice and then returned. The delerium from the coma in the ICU is still very real and frightening. I still need help but get very little from healthcare. How long does recovery last? I don’t know. Will I ever recover? I don’t know. Any help is apreciated.
(I hope you don’t mind that I am keeping my real name hidden – please contact me directly if this isn’t appropriate or if you aren’t comfortable with it)
As a physician who sometimes deals with sepsis, I can appreciate the urgency of the situation you found yourself in. Unfortunately, I feel like one of the bigger impediments to appropriate and timely care is an issue that you in a single sentence at the end of the 11th paragraph. You indicate that “the health care system ends on discharge from hospital for many patients who don’t have strong advocates, as I did.” I would argue that even in hospital, there is a need for greater patient advocacy.
In any health care setting, there is a constant battle that pits the physicians (and nurses, physiotherapists, and other members of the medical team) against the administrators. The executives are forced to focus at least part of their energy on minimizing costs, which puts greater pressure on the medical team. This, in turn, can result in inadequacy of resources (whether in the form of equipment, personnel, or time.) Ultimately, the patient is the one stuck in the middle, and is the one who bears the brunt of these inadequacies.
As you mentioned, you were fortunate to come through this ordeal as well as you did. This is in part due to the support you had, from the time of diagnosis right through to the rehabilitation. I wonder what is the cost to society that results from lost productivity due to inadequate supports for many of the other patients.
With regards to sepsis in particular, there is a significant need for more research and awareness. We are rapidly heading towards what could be termed the “post-antibiotic” era. More and more patients are going to present with systemic manifestations of infections that have not and will not respond to current antimicrobials. We are in dire need for a better approach to managing these patients, both in the early stages of the illness, and through to the prolonged recovery. I applaud all the work you are doing to support this effort. I would appreciate the opportunity to hear more about what you and your colleagues have done, and what is planned – please feel free to email me at your convenience.
All the best for a continued recovery and for good health in the future.