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My sepsis survivor's story: I was lucky

The Sepsis Alliance uses the acronym T.I.M.E. to help people remember what signs to watch for to detect sepsis as soon as possible. (Image from sepsis.org)

Four years ago, after 36 hours of intense on-and-off labor that ended in an unplanned C-section, all the anxieties of those grueling hours in the delivery room melted away the moment I laid eyes on my beautiful, healthy baby boy.

My newborn son looked up at me with such love and wonder that I instantly forgot about everything else. It didn't matter anymore what it took to get to that moment — we got there.

I'll spare you the gory details about the birth, as that's a whole other story (don't worry, there's plenty of gory details to come about other things, just you wait). Suffice it to say, it was rough.

When I was discharged from the hospital a few days later, I still felt like I'd been run over by a truck, but I was a happy new mama anyway. I thought the worst was over. I was eager to get home to settle into mommyhood, and optimistic that I would start feeling better soon.

Instead, one week later, I was in the emergency room, feeling worse than ever.

It started when I woke up from an afternoon nap. I didn't know what was wrong, but I definitely knew something wasn't right. I couldn't stop shivering, and there was an aching pain in my side. I felt a little dizzy and just generally... off. After a few hours of that, and with the pain only getting worse, I finally told my husband, "We need to go to the hospital."

I underwent some basic tests but the ER doctor seemed a little stumped by my condition. He suspected I was having a gallbladder attack (because of where the pain seemed to be coming from, on the right side of my abdomen, up by my ribs).

He sent me home, believing the pain would subside on its own overnight, and told me to come back and see my regular doctor the next day to get my gallbladder checked out. Looking back on it now, I realize I never should have let him send me home. In my gut, I knew this was no gallbladder attack. By the time we left the ER, I was in so much pain that I couldn't walk, and had to be pushed out to the car in a wheelchair.

'Rotting from the inside out'

That night was the worst night of my life. All night long, all I could do was sit up, perfectly still, in a chair in the living room. Any movement at all, even just breathing, caused excruciating pain. I was exhausted, but couldn't sleep a wink. My son would cry to be fed or cuddled and I couldn't reach out for him. My concerned husband would check on me and I could barely respond.

I didn't know what was happening to me, but I remember my exact thought about how I felt: Like I was "rotting from the inside out." I felt like I was going to die.

Right away the next morning, my husband called my regular physician, who was wonderful and urged us to come in immediately. The events of the few hours that followed were, and still are, a blur. I got delirious from the pain and lack of sleep. I do recall struggling to get into a wheelchair so that I could be pushed into the hospital. From there, I underwent an assortment of tests and scans, which all hurt and ultimately proved unhelpful.

Doctors still weren't entirely sure what was going on with me when I was rushed into the operating room for an emergency surgery to remove my gallbladder — which did, in fact, turn out to be diseased and needed to be removed, along with more than 30 gallstones.

But, as the surgeon found out when he opened me up for that surgery, my gallbladder wasn't the primary concern. I had acute peritonitis, which is an inflammation in the abdomen, usually caused by an infection. To put it plainly — and here are some of those gory details I promised — my insides were swollen and gooey with infection, and I needed "a full wash-out," as the surgeon later described it to me.

I woke up from that surgery in a total daze. There were all kinds of tubes stuck in me and machines making noises around me. I looked to my husband, and the expression on his face said it all. He tried so hard not to show his emotions, but he couldn't hide his concern from me. I knew right away that something was seriously wrong.

The surgeon said they were "worried about me" and would be watching me closely. I had sepsis, probably triggered by my C-section a week earlier. If I didn't start showing signs of improvement, they were going to transport me to Fargo for intensive care.

Sepsis. I had heard that word and was vaguely familiar with what it was. I knew it was a serious, life-threatening condition, but I didn't know the signs, and I didn't realize that I was at a greater risk of developing it after my C-section. I never suspected it.

Exhausted and still drugged up as I laid on that hospital bed, I wasn't able to think very clearly, yet in my dreamlike state a lucid vision entered my mind's eye: I saw my husband, quietly carrying our newborn son out the hospital door. It was just the two of them. I was gone.

I resolved right then and there to fight. I did not want my son to grow up without his mother. And I did not want my husband to become a widower. I knew I wasn't entirely in charge of my fate in this situation, but if determination and a strong will have any power at all, I was going to wield it. I wanted to be with my husband and son as they walked out that hospital door. I wanted my life.

I was lucky. My condition "turned around" and I did not need to be moved to Fargo. Instead, I stayed put for a week, a robust cocktail of antibiotics constantly running through me via an IV.

I was able to see visitors, including my son, for at least a short time every day. Someone else — my husband, usually — had to lay the baby across my arm, as I was hooked up to too many machines and too weak to actually hold him. That was devastating for me. I could not be the capable, affectionate new mommy I had dreamed of being.

But at least I was still here. I could see my son, and my other loved ones. I could speak to them. And I was getting better. My dad summed up the situation pretty well when he said to me, "You were dealt a crappy hand, but you're still in the game."

My 'new normal'

Recovery took longer than I wanted it to, and was harder than I expected it to be. It took me three full months to get back into "working order," meaning I felt well enough to carry out the basic functions of life. I could go up and down short flights of stairs again. I could drive to the grocery store. I could finally lift and carry my son around the house. My body, which had been through so much, started to look and feel like itself again. But I knew I would never be the same person I was before.

Those were the worst, and yet also some of the best and most beautiful, months of my life. The agonies and limits of my recovery would bring me to deep "lows," while the elation and adoration I was feeling as a new mom brought me to new "highs." Thank goodness for my supportive and loving husband, as well as parents, in-laws and other loved ones, whose open-hearted help and understanding were so crucial. Their kindnesses will forever be appreciated.

Beyond that official three-month recovery time, there was — and still is — a lot of healing to do. Four years later, I'm continuing to adjust to a 'new normal' of chronic physical and mental health issues that will inevitably last a lifetime.

I have adhesions in my abdomen, which sometimes cause ripping pain, and I have problems with digestion. I've had symptoms of mild PTSD and anxiety, and often feel fatigued in a way I never did before. There's actually a term for all the various things like this that survivors of sepsis can experience — post-sepsis syndrome. Studies have found that up to 60 percent of survivors have it.

Frankly, I'm surprised that number's not higher. Many sepsis survivors have gone through far worse things than I did, and have been left with severe PTSD, intense chronic pain, memory loss and other cognitive disorders, post-intensive care syndrome, organs that don't work properly, and amputated limbs. On the spectrum of sepsis severity, I was actually on the 'Oh, that's not so bad' end. I can only imagine what it must be like for others.

And there are lots of others. More than 1.4 million people survive sepsis every year. Annual hospitalizations for sepsis outnumber hospitalizations for heart attack and stroke combined. Unfortunately, somewhere between one in eight and one in four of those hospitalized patients never make it home. A silent and rapid killer, sepsis claims the lives of 270,000 Americans a year — more people than breast, lung and prostate cancer combined.

Yet sepsis gets very little public attention. It's not talked about much, and when it is, it's often incorrectly referred to as "blood poisoning." We hear about people dying from infections, or "complications from..." — often in those cases, the cause was really sepsis. The word just doesn't get used enough. A poll conducted in 2017 showed that 42 percent of adults in the U.S. had never heard the word sepsis before.

Sepsis is tricky for medical professionals to diagnose, especially in its early stages, so more public awareness of the signs of sepsis — and thus more patients insisting that their doctors consider it as a possibility for their symptoms — would lead to fewer lives being lost. People can die within days, or even hours, of showing their first signs of sepsis, so early detection is key.

I believe that improving sepsis survival rates, and limiting the disabilities that survivors face, starts by raising awareness of the condition. And that starts by simply talking about it. By putting faces to it. By bringing it into the public consciousness.

A national effort is now underway to do that, and I share my story today to contribute to that effort. This week, Feb. 10-16, is Sepsis Survivor Week, a week when the Sepsis Alliance (the nation's leading charitable organization devoted to sepsis awareness) promotes the personal stories of sepsis survivors to bring to light the unseen challenges that many survivors face.

At the same time, coincidentally, this newspaper is in the midst of a community campaign, along with Leighton Broadcasting, Becker County Energize and other partners, to raise awareness of mental illness and help erase the stigmas surrounding it. The campaign is called "Inside Out: A Step Inside Mental Illness." Next week, the Tribune will be launching an eight-part series of feature stories on topics like depression, anxiety and PTSD. I believe my sepsis story fits in.

Until a cure for sepsis is found, early detection will continue to be crucial. And the more people who are able to recognize the signs and symptoms of sepsis, the better the odds are for early detection.

I was lucky. Hundreds of thousands of others, every year, aren't.

What is sepsis?

Sepsis is a potentially fatal medical condition sparked by the body's reaction to infection. It's a global healthcare problem that affects more than 30 million people worldwide every year. More common than a heart attack, it claims more lives than any cancer, yet even in the most developed countries fewer than half of the adult population have heard of it.

What causes it?

Sepsis can be triggered by an infection in any part of the body, from pneumonia to a hangnail. Obviously, not every infection leads to sepsis. Sepsis occurs when the body 'overreacts' in its response to infection, releasing defensive chemicals to fight the infection that instead end up causing an inflammatory response in the body, which can impair blood flow to organs like the brain, heart and kidneys. This can lead to organ failure and tissue damage and, at its most severe, dangerously low blood pressure; this last stage is called septic shock.

Who's susceptible?

Everyone, but those at higher risk include infants and seniors, as well as people with impaired immune systems and chronic or serious illnesses, such as diabetes and cancer. People are also at an increased risk after having surgery.

What are the signs?

Signs and symptoms of sepsis often mimic those of the flu, and can include fever, chills, fatigue, rapid pulse, rapid breathing, pale or mottled skin, nausea, confusion and pain. Unlike the flu, however, sepsis symptoms come on very quickly. In addition, many sepsis survivors describe feeling a sense of doom, as if they were going to die. The Sepsis Alliance recommends watching for a combination of warning signs, identified by the acronym T.I.M.E., which stands for: Temperature (higher or lower); Infection (signs and symptoms of an infection); Mental decline (feeling confused and sleepy); and Extremely ill (pain and feeling like you're going to die).

How dangerous is it?

Very. People can die within days, or in rare cases hours, of showing their first signs of sepsis. Worldwide, one-third of people who develop sepsis die. In the U.S., sepsis contributes to up to one-half of all in-hospital deaths. Patients with sepsis who have no sign of organ failure at the time of diagnosis have about a 15-30 percent chance of death; that figure jumps to 40-60 percent for patients with severe sepsis or septic shock. Sepsis kills 270,000 Americans a year — more than breast, lung and prostate cancer combined.

*Compiled from various sources, primarily the Sepsis Alliance website. For more information about sepsis, and to read many other survivor stories, visit www.sepsis.org.

Marie Johnson

Marie Johnson joined the Detroit Lakes Tribune as a reporter and magazine editor in November 2017 after several years of writing and editing at the Perham Focus. She lives in Detroit Lakes with her husband, Dan, their 4-year-old son and toddler daughter, and their yellow Lab.

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