The Need for Sepsis Awareness: A Survivor’s Perspective

Posted on by CDC's Safe Healthcare Blog
Dana Mirman
Dana Mirman

Guest Author: Dana Mirman

In December 2011, a lack of awareness of sepsis – a disease responsible for more American deaths each year than breast cancer, prostate cancer, and AIDS combined – nearly cost me my life.

It all began with a little bump on my shoulder one afternoon. When it all began, I did not know that within 24 hours, that small bump would develop into life-threatening septic shock and soon I would find myself in the ICU.

The seemingly insignificant little bump became swollen and I developed symptoms that felt like the worst flu of my life. When my husband had discovered my temperature was over 104 degrees, he had rushed me to the emergency room, just on a hunch that this was not an ordinary “flu.”

He had never heard of sepsis, and I had heard the word, but thought it was a rare, largely obsolete disease. I had no idea of the symptoms and certainly no idea it could be happening to me.

When I arrived at the hospital, I was the sickest I had ever been in my life.  My temperature was soaring, my blood pressure was falling, and my arm was in excruciating pain. I soon learned the bump on my arm actually was a skin infection, which had led to cellulitis.

The doctors acted quickly and I was soon admitted to the ICU, where I vacillated between life and death. I was cognizant enough to worry whether I would make it out of the hospital and home again to my two small children, and if so, whether all my limbs would be coming home with me.

After several terrifying, agonizing days, I began to recover, transitioning first out of the ICU and then out of the hospital. I went home to begin what would be a deceptively arduous recovery. Having survived and avoided severe complications like amputations, I expected my recovery would be swift, but it was not.  Weeks turned to months, even years, before I began to feel like “myself” again.  I did not know then that post-sepsis or post-ICU syndrome exists, and can affect many sepsis and ICU patients. Today, nearly three years later, I have much of my strength back, although some of the physical and of course the emotional impacts still linger.

As difficult as my recovery was, I am lucky to be alive. I am lucky that the doctors and nurses at my hospital were aware of sepsis. They saved my life.  Others – who either do not make the fortunate decision to seek emergency medical care, or whose symptoms are overlooked or misdiagnosed – are not as lucky.

But surviving sepsis should not be a matter of luck. The public and medical professionals alike must be aware of sepsis. We must know the name of this deadly disease, and we must know the symptoms. By being aware and suspecting sepsis, we will be able to save more lives — which just might be our own, or those of our loved ones.   The CDC’s efforts to increase sepsis awareness and improve treatment will result in fewer lives lost to this sudden, swift and often-fatal disease.

Dana Mirman is a communications professional. She is a member of the Sepsis Alliance Board of Directors.

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20 comments on “The Need for Sepsis Awareness: A Survivor’s Perspective”

Comments listed below are posted by individuals not associated with CDC, unless otherwise stated. These comments do not represent the official views of CDC, and CDC does not guarantee that any information posted by individuals on this site is correct, and disclaims any liability for any loss or damage resulting from reliance on any such information. Read more about our comment policy ».

    I am a sepsis survivor. Recovery was hard (and made harder by the lack of information out there).

    Thank you for sharing.

    I went to our little local hospital ER twice, they totally missed the mark. Did not give me a simple antibiotic for a urinary tract infection. With in twenty four hours my daughter brought me to a larger hospital in the city near us. I cannot tell you how swiftly they recognized that I was in septic shock! I also was in ICU. Thankfully I survived this, but I felt so miserable, I literally had to make a conscious decision to fight. I ached every where and the simplest things made me breathless. The part that scares me is that I am losing weight still. I see the CDC lists weight loss as a post shock syndrome sign, but how much am I supposed to lose? I don’t have the appetite I did before the whole thing started. If someone can let me know, I would be grateful.

    My mother got treated with sepsis recently a week before. She got the shock twice within a month but as in many cases my mother’s condition was same but was having high blood pressure and after PSS blood pressure still high, and doctors also told to consume just a litre of water only. Is it right treatment or not, do suggest.

    My son is just now beginning the long recovery from sepsis. He was ill and in sever pain approx 8 days before the sepsis was diagnosed. I live in AZ in a town of about 100.000. We have 2 hospitals. Both owned by same company.
    He wss at one of the hospitals 2 times. Both times diagnosed with a sprained neck and sent home with Opioids. After a few days from the last hospital visit, I decided to take him to the other hospital. Thank God I did. Within 3hrs they had him in ICU. He was gravely ill with sepsis.

    Early the next morning he was operated on. Many sacks of pus on his spine. All together he had 3 surgeries. 2 on his spine and 1 on his leg. He spent 23 days in hospital and is now in a physical therapy hospital for 30 days plus.

    He is 55 and has a long road ahead of him and family too. Please trust your gut and if it doesn’t feel right do something. My son would be dead today if I would have accepted the diagnoses from the first 2 doctors.

    It’s been a year since I started to feel bad and thought I had the flu. When it got bad enough I went to the ER with terrible abdominal pains. They gave me IV pain medicine and were discharging me when the pain became a LOT worse. I was admitted for several days, in terrible pain. Despite telling the hospital that I am highly allergic to aspartame, they fed me Jello containing it. My abdomen swelled drastically and the pain increased to an intolerable level because despite a CT scan, they missed the fact that I had a large bowel obstruction and acute diverticulitis. I started bleeding profusely from my rectum, called the nurse who got the hospitalist only to be dismissed by her that ” I had uncomplicated diverticulitis” and just needed to get up and take a shower. The next two days were HELL. Not only was I getting worse, but after the hospitalist blew me off I was bullied by several nurses, including one who jabbed her pen at me when I asked her if there was anything that could be done and said “I’ll tell you what I can do. I can pull this IV out and send you home because this is the ONLY reason you are here. We’re busy and don’t have time to f*** with you.”

    I was sent home with several meds, one of them containing sulfa, despite telling them on admission I am also highly allergic to sulfa. One dose and I was vomiting violently.

    I got worse and several days later saw my primary care doctor. My belly was so swollen and painful that she said my friend that drove me either had to take me straight to the er or she would call an ambulance. I went to the er and it was a repeat of the CT scan where they once again said “no big deal” except that I had one of the worst UTIs they had ever seen. I was again sent home.

    On Dec 26 I went to the er once more and was admitted again. One more worthless CT scan. A day later an MRI showed that I had a ruptured bowel and that it had become septic. An emergency surgery and a few days in the ICU on a ventilator is how I started 2018. I lost a few days of memory and four feet of intestine but am alive. I had a colostomy that was reversed, but still have complications from it as well as the post-sepsis syndrome. None of the doctors ever acknowledged this, nor did they tell me what to expect. I had to figure it out for myself with information from the internet.

    It is imperative that hospitals and doctors get this training to recognize sepsis and its lasting effects.

    after researching effects of root canal going had (2012) and had tooth pulled -waited expectancy for prescription, the receptionist asks what did i want… I said so, she had went to ask Dr and then told that it was not necessary ! at this point I was just wanted to sleep (pain over couple months had finally won making sleep impossible unless sitting upright , therefore my desire for my bed ruling my mind. Since then I’ve dealing with childhood asthma returned & continual bladder infections. never had one until moved to Alberta ¡ and now living in @a government run facility … :{

    My son in law was diagnosed a week or so with Sepsis. The hospital He is in is small. They have not found the source. Sepsis has caused Endocarditis . They have had infectious disease Dr. In cardiologist liver internal medicine. He has had labs MRI Cat Scan. He will be going home with a pic line. Not sure when discharge will be signed a paper giving authorization to put pic line in. So hard not to know the cause nurse said they may never know.???.

    I just had s bad UTI that led to a sepsis diagnosis at the hospital. I’m supposed to have a minor surgery on my wrist in a month and a colonoscopy. Should these be postponed?

    I recently survived severe sepsis. I was in pain and confused, in and out of it for over 24 hours before going to the hospital. I didn’t even have the energy or urgency to call 911. I just wanted to stay in bed. Eventually I received a call, and that person saved my life. She found someone to come to my house, put me in a car and take me to the ER. Within 12 hours, I was transferred to another hospital’s ICU with a sky rocketing temp, racing heart rate, plummeting blood pressure and difficulty breathing. It was Severe Sepsis. By then, I also had kidney surgery. My kidney was extremely swollen and I had a tube placed in order to empty my kidney that much quicker. Morphine, Oxycodone, Percocet, I was on everything for pain. I was pumped with fluids and antibiotics too. Within another 24 hours, I made it out of ICU! By the end of my 7 day hospital stay, I had 3 procedures having to do with my kidneys, a constant heart monitor, oxygen while I was asleep, breathing exercises and several visitors from the ICU staff (they were so happy I made it out of ICU that they had to see me!) One of my nurses, simply stated “That was GOD”. After being discharged, I finally realized how grave my situation was. It’s been about 2 week now, and I’m feeling much better but not normal. I have to lay down after sitting for more than 4 hours. I still get winded if I move too much. People ask me about it when I try to talk after walking or lifting. My husband, 4 children, demanding job and workaholic tendencies make it sooo hard to be still, but I’m forced to listen to my body now. I was beginning to worry a bit about my energy levels, so thank you for sharing your stories and information. The more we share, the more lives we can save.

    I live in a small mountain community in AZ. (Yes we have mountains and snow in AZ!)?
    A virulent form of flu swept thru our city during the past winter and my son, daughter in law and 6 mo grandson all came down with it at the same time the last week of Feb. I live 5 min away and was happy to spend several days with them; nursing , feeding, cleaning and everything else a mom/nana would do. I figured there was a good chance I would get sick too, but they would return the favor when it was my turn. March 3rd is pretty much the last clear memory I have until Easter Sunday. I was very lucky in that our hospital here is aware of sepsis and even holds monthly sepsis meetings for staff to inform and keep up to date with all sepsis treatments and diagnostic improvements. I was diagnosed in the ER with strept, pneumonia, bacterimia and sepsis. Although I was for the most part, blessedly unaware of my situation, the times I was conscious was truly horrendous. Sepsis is a violent illness. I literally almost died and was so ill, I wouldn’t have even known it. If I had waited even a few more hours at home, I wouldn’t be here. If our community hospital wasn’t so aggressively addressing sepsis with the staff, I wouldn’t be here. 3 weeks, 2 hosp admissions, 1 ICU stay and tireless efforts of doctors and nurses saved my life. You would think that surviving the illness would be a happy ending to my story. But actually, it’s more like a very happy halfway point. Im in month one of my post sepsis survival. The recovery ahead is long, convoluted, and unclear as to how much damage is permanent and what my life will look like from here on out. Sepsis awareness and immediate treatment are obviously essential for survival. However when you come home there is little information and support for patients and their family & friends. Again, luck is with me. I contacted my hospital with my need for support and information regarding sepsis survival and recovery and they are going to start a sepsis support group up here. I am 59 yrs old, and was only vaguely aware of the term sepsis before it happened to me. Older folks have a tendency to want to stay home and doctor themselves. Sepsis is fast and aggressive and by the time you develop it, you’re not in a position to help yourself. Keep an eye out for your older family, friends and neighbors if you know they are ill. You might just save a life.

    My poor late wife died of sepsis caused by infection when a nurse tore her skin when changing her PICC line dressing. She was a leukemia patient and the nurse placed a gauze bandage between the seal and the unsealed area, allowing bacteria to get into her arm. Within a day she had redness and a lot of pain. Within a couple of days her entire arm was black and we overheard a nurse say cellulitis. Within 2 weeks she went into a coma and the night she died I tooj her blood pressure many times and sadly watched it drop to zero. I believe she could have lived but the lack of urgency of treatment led to her death. Sepsis is not to be taken lightly and is a dire emergency. All resources available should be used with great urgency to enable our loved ones to live.

    I have got bladder cancer, i will be stating BCG vaccine treatment shortly, sepsis is a side effect.
    What % of patients develope sepsis during this powerful vaccine treatment.???

    April, 2017, I developed Sepsis after fighting a reoccurring UTI, I owe my life to a Pharmacist friend who was concerned about the fever and my doctor who stayed late at his office to see me and ordered cultures, as the weekend was approaching. I still suffer from Post Septic Syndrome, my husband says I am the same but different. The CDC doctors told me that had I not entered the hospital when I did, in a couple days I would have been dead.
    My energy is slowly coming back, very slowly, and I have painful joints on various days, along with depression. This disease is violent, how it reeks havoc on the body and the mind. NO ONE told me about PSS, I am so glad I came into this research to find out what was happening.

    I became sepsis after breaking my ankle & having surgery. When my husband discovered me 2 months later i was unconscience. I was rushed to the hospital and stayed in ICU for several days on a ventilator. My heart went into A-fib and threw blood clots down in my leg. Emergency surgery on my leg took place or i would have lost my leg. I spent 2 weeks in the hospital. It has been 6 months since my nightmare. I am just now starting to feel normal.

    I have had sepsis 1st with a blood clot when I had a Port line. Now, almost a year later I have had it 5 times! We figured out the cause for it finally. I have a PICC line for TPN (total parenteral nutrition). Every time a nurse has had to fill in for my normal home health nurse, I seem to get infected with sepsis. We started watching and they were pushing the PICC line up into the skin when changing dressings and cleanning it. I am now asking the surgeon to place a port in my chest again. I have RSD (Reflex Sympathetic Dystrophy) also known as CRPS (Complex Regional Pain Syndrome). They had run out of options to place any more PICC lines in my good arm and had to place the lst PICC line in my RSD/CRPS arm. RSD/CRPS is know on the McGill Pain Index Chart to be higher than amputation, cancer pain and childbirth. It’s at the top of the chart. I cannot handle this in my bad arm. It’s irritated all the time now and so painful, I have a hard time having clothes on it, or even moving the hand and arm. I’m praying that the surgeon says he can place another Port line in me. I also have a stoma hole (Feeding tube hole) that won’t close on it’s own. So I need to have that sewn up at the same time. The stoma hole has been an open hole for almost 2 years now. The Dr. says with a normal person, they close on their own, within 7-9 days. I’m complex and things just don’t heal easy with me. I never have energy since having all these bouts of sepsis. My iron was very low for awhile but it’s better now. Still, if I do too much of light housework, I get faint and have to go lay down. I didn’t know it would take so long to gain any energy back. Thank you for having this site. And to all of you that have suffered with sepsis, I’m so glad you’re all still here. To those who have passed on from sepsis, may God bless you and may you all RIP

    I am happy that you are better now but what was the cause of the bump on your shoulder? Was it perhaps a spider bite or something?

    Two weeks ago, l created a 7 question survey to assess the knowledge of my patient population/community on Sepsis. The first question on the survey was “Have you heard of the term Sepsis”. Surprisingly, more than a third of the 50 people l have surveyed so far, answered “no”. Education is definitely paramont to enable early recognition and immediate help to prevent the catastrophic events of this deadly infection. Articles like this in the CDC, the surviving sepsis campaign etc have really increased the much needed awareness of prevention, early recognition and prompt intervention to save lives daily, just like the survivor in this article.

    Hello. I was interested to know what the causative organism was that yielded her sepsis. Thank you in advance!

    I am happy that you survived and thank you for making me aware of the time element for recovery. I am a Sepsis MRSA survivor. As with your initial diagnosis, they believed that I had the flu. My normal body temperature is low; 96.4º F. From March until the middle of May my temperature ran as high as 104.6º F.

    After spending six months in hospital I left weighing 90 lbs. less than when I entered. I could not stand or walk. I was in therapy for 8 months. After I continue to workout three times a week in order to build back my body and strength, It has been a year now since I was released from hospital. I still have pain in my back and am limited in how much and long I can walk. In your case it took three years to get back to where you were before sepsis. I now see the light at the end of the tunnel. Thank you again for giving me hope.

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