Sicker than I’d ever been before: a patient’s experience of sepsis

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):

One thought on “Sicker than I’d ever been before: a patient’s experience of sepsis

  1. Doc C

    (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.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *