Eli's Sepsis Story – 'It Could All Have Been Prevented by Listening to Me and Taking Me Seriously'

My name is Eli, I’m 39 years old now, and I am a sepsis shock survivor. I was born in Eritrea but raised in Germany where I still live. My septic shock happened in September 2016, when I was 36 years old.

I've had extreme period pain since my youth and it only got worse after I had kids. I tried many therapies, but none worked, and one doctor finally recommended laparoscopy and endometrial abrasion to get rid of the problem once and for all, both routine surgeries.

After this routine procedure the doctor told me everything went well and nothing vicious had been found and they would discharge me from the hospital. My husband and I were relieved but when I wanted to use the bathroom before getting dressed, I felt very dizzy and couldn’t hold myself.

My husband and the nurse helped me to use the toilet and put me back to bed. My blood pressure was very low and I started to vomit.

The doctor came to see me but was dismissive about the symptoms, arrogantly declaring, “Well, you probably just didn’t tolerate the anesthesia. I already told you that you can go home because everything went well.”

Thank god my incredible husband insisted that I stay at the hospital. Something didn’t feel right. During the night I woke up because I thought I peed in my bed. I switched on the light and I saw myself lying in a pool of blood. I called the nurse. They taped my bellybutton and I went back to sleep. I woke up in a pool of blood again. They then stitched my bellybutton.

The next day I kept feeling worse and worse, but the medical staff didn’t pay much attention to my deteriorating condition until I started to complain about severe pain in my belly. The doctors conjectured that maybe a bowel loop got tangled up and they decided to do a CT scan which didn’t turn up anything.

I started to lose blood from the IVs in my arm. It flowed like water from a tap. I later learned I was suffering DIC -Disseminated intravascular Coagulation. My feet hurt like someone was trying to rip them off. My parents and my husband said they never saw anyone in such pain. I started to lose consciousness.
My last words were, “Don’t you worry, God will watch over me.”

Eventually they decided to perform another laparoscopy and saw that I had an ovary thrombosis on the left side. They immediately sliced open my belly (laparotomy) to make sure I had no pulmonary embolism which I didn’t. Instead I had a lot of inner bleedings and it was pouring from every hole.

By that point I was in a septic shock and my life was hanging by a thread. Sepsis was spreading through my body like wildfire. The operating team decided not to get me back out of the sleep they had put me in and left me in a drug-induced coma. Having first nearly killed me through neglect, the doctors and nurses fell into a panic as they realized this young patient – me – was about to die.

The hospital I was at wasn’t equipped for that kind of emergency. They only had a tiny intensive care unit and were running out of blood bags. The team frantically called the city’s big hospitals. After the first two turned them down, one said they would take me in. An ambulance with me inside raced the 5.6miles with howling sirens on empty roads in the early morning hours.

When we arrived at the new hospital, the sepsis had already killed my ovaries and uterus. Slicing open my belly yet again, the surgical team removed them but – thankfully – decided my vital organs were largely unharmed. Having removed the main source of the infection and with a powerful antibiotic finally kicking in, I survived. The doctors would later point out how I had been snatched from the jaws of death.

However, that didn’t mean the end of my pain. They left me in my coma for a week and it took me another week to fully wake up, including four days spent in intensive-care unit delirium. Severe and extremely frightening hallucinations set in, turning those four days in the worst time of my life. The hospital staff – presumably overworked and used to the sight of people screaming for protection from non-existent enemies – didn’t help much. At one point, they tied my arms to the bed so I wouldn’t rip the tube out of my throat or the many other cables and IVs from my arms and neck. I had pulled out the feeding tube from my nose earlier…

The agony wasn’t over. Before they moved me to a regular care unit, they had to cut me open one more time to clean out more inner bleeding.

That wasn’t all. Even though my overall health improved once I had left the hospital and gone through rehabilitation, a strong pain in my left arm would just not go away. Again, the various doctors I consulted said it’s normal and I shouldn’t worry too much. Only when I had an X-ray done after 13 months a thin wire showed up in the picture did the radiologist realize that the first hospital’s operating team had left a 15-inch wire in my arm.

Another surgery followed in which they removed the wire. However, it had been in my arm for so long it had grown into the tissue and the surgeons had to destroy part of the artery to get it out. My left arm now suffers from undersupply of oxygen. It frequently hurts and there’s a long-term risk of losing it.

I have been in pain ever since that fateful day of my first surgery. It’s not just my arm and my abdomen; my whole body and soul hurt. Still, I’m thankful to the phenomenal doctors and nurses at the second hospital, without whom I wouldn’t be here anymore. And to my marvelous family and friends, especially my wonderful kids, my loving husband, my heroic sister, and my self-sacrificing parents. I am forever grateful even though I am exhausted from the lasting damage.

 What I wish for the future is that the medical staff takes every patient seriously. And after the patient was lucky enough to leave the hospital alive that there is more education about sepsis. Because I felt or still feel like no one is there to help me with the aftermath. Sepsis education needs to spread so more people can survive.

It’s so crazy that even educated doctors often miss the signs – my septic shock was recognized only 15 hours after I showed first signs. The first hospital was very dismissive about my symptoms until it was almost too late.

Unfortunately, more than 3 years later, I still don’t know what led to the sepsis. The doctors never found out. But what is clear is that I came to the routine surgery healthy but left it almost dead. And what is even worse is that a lot of my suffering would have been easily preventable by simply listening to me and taking me seriously.


The article above was written by Eli Arons and is shared here with her explicit consent. The views in the article do not necessarily represent those of the Global Sepsis Alliance. They are not intended or implied to be a substitute for professional medical advice. The whole team here at the GSA and World Sepsis Day wishes to thank Eli for sharing her story and for fighting to raise awareness for sepsis.


Marvin Zick
A Greater Focus on and Resources for Sepsis Needed, as COVID-19 Pandemic Highlights
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On Monday, May 18th and Tuesday, May 19th, the 73rd session of the World Health Assembly is taking place in Geneva. The Director-General, Dr. Tedros Adhanom Ghebreyesus reported on the progress of the 2017 WHA resolution on “Improving the prevention, diagnosis, and clinical management of sepsis“.

GSA salutes the engagement of WHO and the progress made. Significant advances in the fight against sepsis have been achieved, as shown by the recent publication in The Lancet of the analysis on sepsis for Global Burden of Disease study. Sepsis mortality has dramatically decreased over the last twenty years. However, the challenge remains, as the 49 million cases and 11 million deaths annually prove, and increased resources are needed to improve outcomes in the global fight against sepsis.

The COVID-19 pandemic has confirmed that our capacity to identify and treat sepsis is paramount as, in the worst cases, victims of COVID-19 actually die of sepsis.  Sepsis is “a life-threatening organ dysfunction caused by a dysregulated host response to infection.” In the case of COVID-19, the effects on the respiratory system are well-known, with most people who require hospital admission developing pneumonia of varying severity; however, virtually all other organ systems can be affected. This is consistent with a combination of direct viral invasion and a dysregulated host response giving rise to sepsis. Recent studies have proven that, in a significant number of patients with COVID-19, multi-organ dysfunction has occurred. As there are no proven therapies currently effective against the virus itself, it is apparent that the best COVID-19 care includes good sepsis care.

In May 2020, WHO will publish the first global report on sepsis epidemiology and burden, which will extensively cover sepsis from a global perspective. Some countries have also already taken on board the recommendations of the 2017 WHA resolution and initiated national sepsis plans. The recent annual meeting of the European Sepsis Alliance showcased some best practices.

However, more needs to be done. The Global Sepsis Alliance will foster its engagement with global and local stakeholders and policymakers to advocate for a structured approach towards sepsis in all countries and the implementation of the WHA resolution. We call on WHO and national governments to allocate greater resources for improving the focus on sepsis to prevent deaths, long-term consequences on survivors and eventually relieve the heavy burden that sepsis presents to public healthcare and the economy.

Marvin Zick
Updated Sepsis Fact Sheet Now Available for Download
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Our updated Sepsis Fact Sheet is now available for download, conveniently summarizing the most important facts about sepsis on one single page. It includes facts on the global burden of sepsis from the recent Global Burden of Disease Sepsis Study, consequences for survivors, symptoms, and more.

The new Sepsis Fact Sheet joins our infographics, sepsis awareness posters, life after sepsis brochure, pocket cards, sepsis awareness clips, and much more as a free download in our WSD Toolkit Section, the most comprehensive pool of free resources on sepsis worldwide.

We put a lot of thought and time into the new fact sheet – please contact us to give feedback so we can improve it even further. Lastly, please consider donating to support the ongoing development of our free sepsis awareness resources – thank you so much!

Marvin Zick
Sepsis Hysteria: Facts Versus Fiction
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In October 2019, Professor Mervyn Singer and colleagues wrote a letter to The Lancet alleging that the claims around the incidence of sepsis were overstated and that highlighting the importance of early intervention has increased antibiotic consumption.

Senior members of the Global Sepsis Alliance prepared a considered response to these allegations which the Lancet declined to publish, with the result that the response has been released in Intensive Care Medicine this week.

We continue to advocate, supported by robust evidence, for sepsis to be established as a global health priority, and maintain that incentivization towards better sepsis care is entirely compatible with the preservation of antibiotics as evidenced by the UK’s own data. Today, thousands more people worldwide will develop sepsis. This is not hype, this is a tragedy.

Marvin Zick
Today Is World Hand Hygiene Day – Nurses and Midwives, Clean Care Is in Your Hands

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Today is World Hand Hygiene Day – clean healthcare is among the most urgent challenges identified by the United Nations to be addressed by the global community in the next 10 years, and is highly relevant in meeting the Sustainable Development Goals (SDGs), as well as fighting against infections, sepsis, and, most recently, SARS-CoV-2/COVID-19.

Since the World Health Assembly has dedicated 2020 as the International Year of the Nurse and the Midwife, this year’s World Hand Hygiene Day theme is ‘Nurses and Midwives, clean care is in your hands’.

Please join us in celebrating World Hand Hygiene Day today. Share the official song (embedded below) with your friends and colleagues, join the campaign on social media, participate in the free WHO webinar today at 14:00h CEST, or register your institution, if you have not done so already.



Although 80% of sepsis cases are contracted outside of the hospital (see video below), hand hygiene plays a critical role in the prevention of infections, and therefore the prevention of sepsis.

Consequently, the WHO and the GSA urge all healthcare institutions, all health workers, as well as all policymakers and other stakeholders to address hand hygiene, infection prevention and control, and sepsis holistically as pillars of a coordinated strategy.

There are between 47 and 50 million cases of sepsis every year worldwide, with 11 million deaths per year. 20% of all worldwide deaths per year are associated with sepsis, including many from SARS-CoV-2 / COVID-19.

In May 2017, the World Health Assembly adopted a resolution on improving the prevention, diagnosis, and treatment of sepsis, spearheaded by the Global Sepsis Alliance.

Marvin Zick
New Research from the WHO Global Maternal Sepsis Study (GLOSS) + Exclusive Interview with Study Lead Dr. Bonet
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On Tuesday, April 28th, the newest research from the Global Maternal Sepsis Study was published in The Lancet. On this important occasion, we were able to speak to Dr. Mercedes Bonet, Study Lead at the World Health Organization (WHO), exclusively.

 

Marvin Zick: Please introduce the Global Maternal Sepsis Study (GLOSS).

Mercedes Bonet: The Global Maternal Sepsis Study (GLOSS) was a massive research effort led by the World Health Organization to better understand and stop maternal sepsis.

If we can understand why maternal sepsis is still a leading cause of death for women and newborns we will be better equipped to combat it. GLOSS is the first study to provide data on the frequency of maternal infections across the pregnancy and post-pregnancy period, in over 700 health facilities across 52 countries. The data collection was also accompanied by a campaign for healthcare providers, which increased their awareness and understanding of maternal sepsis identification and management.

 

MZ: Please introduce yourself.

MB: My name is Dr. Mercedes Bonet and I am a medical officer working at the WHO Department of Sexual and Reproductive Health which also hosts HRP, the main instrument within the United Nations system for research in human reproduction.

While I oversaw the study from WHO headquarters in Geneva, it was really a concerted global effort that engaged over 100 researchers across the 52 participating countries who supported the development of the study protocol, led the data collection, and the implementation of the awareness campaign.

 

MZ: Can you Please summarize the findings from the recent publication?

MB: The WHO GLOSS Research Group, which published results in The Lancet Global Health on April 28th, shows that infection has a much larger impact on global maternal mortality and morbidity than previously thought.

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This is mainly due to two factors.

First, the underlying contribution of maternal infection to adverse maternal outcomes. Women may have died or developed severe morbidity from other complications, such as postpartum haemorrhage, but infection was present. Second, unlike previous estimates, GLOSS reports not only on direct (obstetric) infections, but also on infections after abortion and indirect (non-obstetric) infections, in keeping with the WHO maternal sepsis definition across the continuum of pregnancy, childbirth, and post-pregnancy periods.

The study also highlights important gaps regarding the early identification and management of maternal infections in health facilities. For example, a third of women did not have a complete set of vital signs reported on the day of suspicion or diagnosis of the infection.

Finally, we found that the most common infections are highly preventable with good quality care across the pregnancy and post-pregnancy continuum.

 

MZ: What surprised you most about the results of the study?

MB: The true burden of maternal sepsis has been unknown, owing to a lack of data, in particular for low- and middle-income countries. It was not a surprise, so much as an urgent step forward for GLOSS to address the absence of standardized data from those countries and to see more clearly what is actually happening around the world.  

This is critical for prevention, early diagnosis, and prompt management of maternal and neonatal infection, which we know will save lives and directly contribute to the achievement of Sustainable Development Goal 3.

 

MZ: Can you explain the differences between low- and middle-income countries and high-income countries?

MB: Most maternal infections are preventable and treatable, but efforts to prevent, diagnose, and treat maternal infection are linked to broader health determinants and different country contexts.

Overcrowding, limited access to water and sanitation, substandard infection prevention and control measures, limited resources, including staff, supplies and equipment, and constraints to safe births by skilled birth attendants can reduce the ability of healthcare providers to manage the frequency and outcome of maternal infections. These factors may explain why the highest ratios of maternal infection and severe maternal outcomes were observed in low and middle-income countries.

 

MZ: What do you think is the reason for maternal sepsis not getting the attention it deserves globally?

MB: For a long time, the focus has been on addressing the two main maternal killers: post-partum haemorrhage and pregnancy-induced hypertension. Although we knew sepsis deaths due to obstetric infections were just next on the list, data on maternal infections were less frequent and often of limited quality.

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Alongside our GLOSS results, there has been other important work on sepsis this year. Incidence estimates and an evidence synthesis on the incidence of peripartum infections, commissioned by WHO, confirmed that maternal infections are a real problem, and deserve more attention. 

Prevention and management of maternal infections are complex challenges and require a comprehensive response. This must be at all levels, from addressing individual-level risk factors (such as anemia or obesity) to behavioral changes by staff to improve monitoring and use of preventive measures.

Finally, improvements in infrastructure and resources are key. Attention to maternal sepsis is growing, but health facilities need investment in clean water and sanitation, infection prevention and control measures, training, and equipment.

It is extremely encouraging that WHO will publish a global sepsis epidemiology report in May around the 73rd World Health Assembly (WHA). This is in response to the 2017 WHA Resolution on Improving the prevention, diagnosis, and clinical management of sepsis.

 

MZ: What are the next steps for GLOSS and the WHO? Did the study point out any opportunities or untapped potential?

GLOSS presents, for the first time, a more complete understanding of the frequency and impact of maternal infections in health facilities.

Our hope is that GLOSS has answered some important questions about the role of maternal infection and sepsis in global maternal mortality and morbidity. With these data, healthcare providers, policy-makers, and the public at large are better equipped to mobilize, improve evidence-based practice, and save lives.

WHO is committed to improving the prevention and management of maternal infections through its research and normative work. Under the umbrella of the Global Maternal and Newborn Sepsis Initiative we are working with healthcare workers, researchers, and policymakers so that together we can stop maternal sepsis.

The data collection was also accompanied by an awareness-raising campaign for healthcare providers, which could improve maternal sepsis identification and management.

 

MZ: Is there anything else our audience should take away from the Global Maternal Sepsis Study?

MB: Every pregnant or recently pregnant woman is at risk of an infection that could trigger sepsis, regardless of where she lives.

Significant efforts are needed to develop and implement comprehensive approaches for effective prevention, improved identification, monitoring, and management of maternal infections and sepsis in health facilities.

Please visit http://srhr.org/sepsis for more information and resources about GLOSS.


Press Release

Please download the GSA press release below or use the press release template to issue one on behalf of your organization.


The above interview was conducted by Marvin Zick via email on April 30th, 2020. A big thanks to Dr. Bonet and the WHO Communications Team for putting this together so quickly.

Marvin Zick
Abdulelah’s COVID-19 Story – From National Healthcare Leader to COVID-19 Patient
Photo Credit: Saudi Patient Safety Center, 2020

Photo Credit: Saudi Patient Safety Center, 2020

As a healthcare professional (hepatobiliary surgeon), and as the leader of our national patient safety organization (Saudi Patient Safety Center), you think that you have seen it all. Well, that perception had to be re-evaluated the moment I was told: “You tested positive for COVID-19…”

The story began on Friday, March 20, 2020, when I started complaining of flu-like symptoms. It was unusual for me to get the flu at this time of year, as I’ve been blessed with great health and very good immunity. Over the past couple of years, I hardly even got sick with a mild cold. So, when I got severe flu-like symptoms, I was concerned.

Out of precaution, I decided to stay in home isolation, just in case. Over the next 3 days, my symptoms didn’t get better – high fever, sweating, generalized ache, diarrhea, cough, chest pain, and loss of sense of smell. As healthcare professionals, we were always “cautioned not to play the role of our own doctors”, but I was pretty sure that I had community-acquired pneumonia, based on my symptoms. I managed to start myself on Azithromycin orally. 36 hours after starting the antibiotic, it became clear to me that the treatment was not helping as my symptoms persisted- they had actually gotten worse. It was at that time that I checked myself into one of the tertiary hospitals in Riyadh.

At the emergency department, my temperature was 39.5° with a heart rate of 91 (which was high for me as I usually run in the 60s). I didn’t need any oxygen support as my O2 saturation was 93-94 % on room air.

I was admitted to a negative pressure isolation room, and it was at that time that I realized I just made the transition from a “National Healthcare Leader” into a suspected COVID-19 patient. My chest x-ray showed signs of a left lower lung infiltrate consistent with acute community-acquired pneumonia. I ended up also having blood and sputum cultures taken, in addition to a nasopharyngeal swab for COVID-19. To cover all the bases, I was started on broad-spectrum IV antibiotics in addition to Hydroxychloroquine.

Within 24 hours, my results came back positive for COVID-19. I have to admit that, even though I couldn’t remember being exposed to any suspected or confirmed COVID-19 patients, I wasn’t surprised to be positive for two reasons:

  1. My symptoms were so severe, which was very unusual for someone like me who hardly gets a mild cold.

  2. My body’s response to Hydroxychloroquine was so pronounced. With the first 2 doses of it, I had shaking and chills for 30 minutes every time I took it.

36 hours after I was started on the Hydroxychloroquine, my fever subsided, and my other symptoms started to improve. The pleuritic chest pain continued for about 7 days. but eventually receded.

My overall hospitalization was for 4 days after which I was transferred to quarantine. In my country, the government in collaboration with several hotels have transformed a large number of hotels into “Quarantine Centers”. These centers deal with the following conditions:

  1. Citizens coming back to the country from abroad.

  2. Asymptomatic COVID-19 patients that didn’t need to be admitted to hospitals.

  3. Symptomatic COVID-19 patients who just finished treatment and no longer require to be in the hospital.

I belonged to the third category. The protocol is that you must have two consecutive negative swabs 24 hours apart before you are deemed ‘cured’ and be allowed to go back home. It took me 7 days after I got discharged from the hospital to have my first negative swab (the first two swabs were positive). After a total of 15 days in quarantine, I was given a clean bill of health (after 2 consecutive negative swabs) and was discharged home.

Here’s some reflection on my experience with COVID-19:

  1. I am still unclear on how I contracted COVID-19 (most likely from an asymptomatic carrier as I was very careful with any suspected and/or confirmed COVID-19 individuals).

  2. I had 4 days of severe flu-like symptoms where I isolated at home. Throughout my entire life (43 years), this qualifies to be the worst flu I had.

  3. My hospitalization in a negative pressure isolation room was for 4 days. Even though I developed COVID-19 pneumonia, I never required oxygen or any other respiratory support.

  4. I strongly believe that Hydroxychloroquine was effective and very instrumental in my speedy recovery.

  5. My experience in isolation has highlighted a couple of potential safety risks:

  • Responsiveness to COVID-19 patients is poor due to a number of factors, one of which is the health workforce’s concern about contracting the virus from patients.

  • Identification of caring health workers (nurses, physicians, allied health), while they are wearing full PPE attire becomes very difficult. I suggest that health workers either put their photos or at least their names on their gowns so patients would be familiar with who’s looking after them.


The article above was written by Abdulelah Alhawsawi, and is shared here with his explicit consent. The views in the article do not necessarily represent those of the Global Sepsis Alliance. They are not intended or implied to be a substitute for professional medical advice. The whole team here at the GSA and the World Sepsis Day Movement wishes to thank Abdulelah for sharing his experience and for fighting to raise awareness for sepsis and patient safety.


Marvin Zick