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The Faces of Sepsis: Could It Be You or Your Loved One?

By Ilene B. Gottesfeld, EdD, RN, Clinical Development Specialist, Medical Simulation Corporation

This guest blog from our partner,Medical Simulation Corporation, is published in support of Wold Sepsis Day, whose goal is to reduce the global incidence of sepsis by 20% by 2020.

Each year, sepsis affects 20-30 million people worldwide. Of those, approximately 8 million die. Increased awareness, research, education, and adherence to protocols collectively contribute to a significant reduction in mortality. But is that enough? Have we done all we can? Should we tolerate even one occurrence of sepsis? Is that realistic? Or should we aim for zero progression and early identification? There are many opinions and approaches. Is there any one answer? Must we, as healthcare professionals have one unified approach? Or are there many effective ways to eliminate sepsis and its associated problems? We continue to pose questions and look for answers in the hope that one day soon sepsis will be something we speak of in the past tense.

The Back Story

Diseases are often abstract states that we learn about in texts, literature, and at conferences. We may not always have an opportunity to truly see or treat patients with them. Some are specific to certain regions. Others have limited prevalence or specificity and therefore are treated in settings where targeted expertise exists. Sepsis however, is not unique to any population. It is not specific to any age group. It is not exclusive to any culture, religion, or gender. It doesn’t play favorites. It touches the lives of the young, the old, and the in-between. And it existed long before it was labeled as such or had criteria collated that combined to define sepsis.

The scope and insidious nature of sepsis has increased. Some would speculate due to the early recognition, others because the tendency when anything in healthcare is more accurately defined, the numbers increase. We have broadened our parameters, and we have increased awareness and incentives to recognize and treat early; mortality is declining as a result, but incidence is not.

Faces of Sepsis

We know that we connect to complex content more acutely when we are able to place it into context. It’s easier to understand the significance of procedures, goal, and treatment interventions when we not only grasp the ‘why’ but also the ‘who’ in healthcare.

Given the nature of sepsis and its increasing presence in our daily lives (professionally and personally), it seems appropriate to draw greater attention to the realities of our patients’ experiences. To honor World Sepsis Day I have chosen to personalize sepsis for myself and for you, with perspectives of three survivors… each from different generations, each with similarities and differences of experience, each from a different geographic region in the U.S., and each with severe sepsis at different times in our evolutionary treatment and recognition progression.  They have willingly provided insight into their experiences to help us understand the enduring reality of sepsis in the lives of the people we treat. 

To M, N’s mom, and B… thank you for sharing, and taking the risk to relive the experience on an emotional level.

IN THEIR WORDS

1. M’s Story – New York, NY (1997)

(Early 40’s year-old female)

What do you remember about your illness? 

My appendix burst early Saturday morning in November 1997, but I didn’t know that then. I had been nauseated Friday evening but never vomited. I awoke with severe, continuous pain, and after many hours realized I should go to a doctor. My doctor examined me and immediately sent me to the ER for evaluation (he was unsure whether the pain was coming from my gall bladder or my appendix). This was Saturday about 11 am. They took x-rays and a CT scan and had no idea why I was in so much pain. They wouldn't give me any medication to relieve the pain because they said they didn’t want to ‘mask’ the symptoms. By Sunday morning I was unable to urinate, but had to beg to be catheterized (why did I have to beg?). Late Sunday night they finally decided my appendix had burst and would perform surgery Monday morning (why did they wait so long?). 

After surgery I began to recover for a day or two and then went downhill. I became so weak and every fiber of my being hurt—if someone touched me it hurt, and to move a limb or my head hurt. My nurse told me that I “was the youngest person on the ward, and that I wasn’t able to get out of bed because I was lazy and not participating in my recovery.” I don't know exactly when but they did blood work and discovered that I had sepsis and peritonitis. I think it was about two days after the surgery.

They started giving me massive amounts of IV antibiotics, IV fluids, and drew blood every few hours around the clock. My arms were so bruised from the frequent blood work and restarting of IVs daily that my veins developed phlebitis within 24 hours. My pain was increasing but they would only give me pain medication when I asked for it and only a predetermined amount of hours since the last dose. They didn't just give me the meds—I had to ask, so I was afraid to fall asleep because if I slept I would wake up in so much pain that the meds would barely put a dent in it. After 17 days of antibiotics, fluids, and no nutrition, I was released from the hospital extremely debilitated and depressed. I had lost more than 20 lbs. 

When did you first know you had sepsis? 

Not until after my surgery. No healthcare workers really explained much to me at all. They just expected me to get better. 

How has sepsis impacted your life? 

I have never felt the same. I have never recovered my strength or sense of wellbeing. I have never been as physically strong as I had been. There was no follow-up other than to remove the stitches. It was then that my surgeon told me that if I didn't have an incredibly strong immune system I would have died. 

What would you like others to know about sepsis? Healthcare professionals? The public?

Just how unbelievably debilitating it is and at least in my case continues to be even 16 years later. 

If you had to choose one thing that you believe can/or could make a difference for those who have or might have sepsis, what would it be? 

Diagnose it right away. Pay attention to what a patient is telling you. In my case they should have been on the lookout for both sepsis and peritonitis because not only did my appendix burst, but it had burst Friday night and the surgery wasn't until Monday morning. 

2. N’s story (as told by his mother) -  Portland, OR (2001)

(full-term newborn boy)

What do you remember about your son’s illness?

My memory is a bit sketchy. There are some gaps because I required an emergency C-Section for ruptured membranes and meconium staining. There was a 5-6 hour delay to perform the procedure. I recall N being delivered, and then feeling woozy (noticed my blood pressure on the monitor was around 67/30). The next moment I recall was awakening in the ICU intubated 24-hours later.

N was in the NICU progressing nicely and staged for discharge. At the time of discharge, a nurse quietly suggested to me that I get to the pediatrician as soon as possible after discharge as she did not have a good feeling. Over the next 36 hours he became very yellow and stopped eating. We saw the pediatrician early the next morning and he was admitted to the NICU in what we now know was severe sepsis.

Eventually we were told that they didn’t think he was going to make it through the night. Bacteria were identified in his blood and urine. The organism was citrobacter (a specific type of bacteria) and eventually linked to the OR. A PICC line was inserted in his neck, and he was given gentamycin (an antibiotic), so we were also worried about his hearing. He was hospitalized for two months during which time he developed a condition in which the lining of his intestines began to slough off (NEC).

When did you first know he had sepsis?

When the cultures came back positive for citrobacter. Then I read everything I could about it.

How has sepsis impacted yours and your son’s lives?

We are more aware and hyper-vigilant when the kids get colds and even when they come home from school. I have them wash their hands often and avoid others who are ill whenever possible. I owe a lot of people my life and my son’s life… the NICU nurses are truly angels. I believe it contributed to my wanting to become a nurse; I want to give back.

N doesn’t seem to have any residual effects other than being more sensitive to noises in the ear on the side of head with PICC line. He has an incredible bond with his dad who was there 24-hours a day, holding him and talking to him the entire time he was in the NICU. I think that bond was created then.

What would you like others to know about sepsis? Healthcare professionals? The public?

Healthcare professionals should be hyper-vigilant in care and research they undertake before helping patients… better prepared. They should make sure they are able to educate patient’s families truthfully.

The public needs to be informed and aware of what’s out there and what options are. They need not to be afraid to be vocal and challenge. My message is: Go with your gut – question if it doesn’t ring true.

If you had to choose one thing that you believe can/or could make a difference for those who have or might have sepsis, what would it be?

Everyone needs someone who understands medical system to help navigate the system.

3. B’s Story - Denver, CO (2012-2013)

(Early 60s year-old male)

What do you remember about your illness? 

I just remember having what I thought to be a mild cold over Christmas and then about December 29th I started feeling a bit worse. The 30th of December, I went to Urgent Care, and they gave me a prescription for some antibiotics and said they thought I might have pneumonia. They told me if I didn’t feel better the next day to go to the ER or come back there. Well, on the 31st I slept until noon and when my wife pushed me to go to the ER it took me an hour to get dressed because I was so weak. She called the hospital and said she was bringing me in and they met me at the door with a wheel chair. They took me in and got me on the table in the ER, and I immediately went unconscious. I don’t remember a thing until I woke up about a month and a half later. 

When did you first know you had sepsis?

I didn’t know until I woke up and found out I had been intubated and had been on dialysis. I was on dialysis for about 8 weeks, best I can remember. I had it 2-3 times a week for 5–6 hours a day. 

How has sepsis impacted your life? 

My kidneys are functioning at about 30% of normal but seem to slowly getting better. My lungs have some scar tissue, and I’m now on an Advair HFA inhaler twice a day. I am on 5 units of Novolin insulin a day and have lost about 80 pounds. My feet are numb, and my right hand is still a bit numb and tingly but my strength is coming back slowly. I can walk with a walker and my AFO’s about 1 ½ to 2 blocks now. My diet is restrictive due to the kidney failure but I’m not a nut about it. I watch my sodium and potassium pretty closely. My red cells are low and stay that way… I may have to get a shot next month to bring them up some. 

What would you like others to know about sepsis? Healthcare professionals? The public?

Just be extremely careful about flu and pneumonia. It really hit me hard. I probably wouldn’t have had much of a life if I hadn’t gone to the doctor when I did. You just don’t get over the flu/pneumonia and not have lingering and life changing side effects. I could only lift my left hand (not the arm, just the wrist) for weeks after I woke up. I had to spend two months in a long term care facility just to get strong enough to be transferred to a rehabilitation hospital. 

If you had to choose one thing that you believe can/or could make a difference for those who have or might have sepsis, what would it be?

I feel fortunate that the doctors jumped on the problem when they did. Since I was unconscious so much of the time, I don’t remember a lot but I had a great team of doctors at local hospitals. My family members played a big part in keeping doctors focused on my needs but they wanted to unplug me from life support twice. My wife luckily didn’t allow it. I found a real need to have multiple independent doctors to evaluate a person before stopping life support and I have altered my living will to reflect that now. 

Training and education for doctors is critical for people be quickly evaluated and treated properly. Patients and their families need to fully understand the severity of sepsis and how quickly it can hit.

Conclusion

Three people have shared with us to make the experience of sepsis real.  Each experience recounted what we know now as severe sepsis/septic shock. The interviews have merely scratched the surface of what they went through, but they give us a snapshot of sepsis and treatment in different decades and in different parts of the country. Are they unique? Yes. Do they have similarities? Some. Have they demonstrated progress in identification or management of sepsis over the years? Yes, in some ways. Do they underscore the need for further knowledge, understanding, early identification and treatment of the many faces of sepsis? Absolutely! Have they personalized it for you? They have for me.

I would love to hear your sepsis story, if you have one to share.

HealthStream has carefully selected specialty training courses which focus on rapid diagnosis and treatment of sepsis using evidence-based guidelines to improve patient outcomes. 

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