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.