Jan B.

Survivor

This was my Facebook post for Sepsis Awareness Month:

I’m not really sure why I’m alive today. There is no real reason why so many people in my situation die or suffer organ failure or lose their hands, arms, and feet, and I walked out of the ICU and returned to work 30 days later.

There is no doubt whatsoever that I had bacterial pneumonia in advanced stages for a long time before I was hospitalized last Valentine’s Day. (Sepsis and Pneumonia) I had been feeling drained, out of breath going up simple stairs, my fingers turned dark and tingled at times, every now and then I took a day off of work to rest and it didn’t really help. I didn’t get worse, really, but I didn’t get better either.

I saw three doctors within 10 days of being hospitalized. I went to my own GP who diagnosed me with a virus that was going around. The symptoms were the same, it was taking a very long time to pass which explained why I had felt that way for weeks. I had a colonoscopy days after that. I presented with a mild fever, but they checked me over and we decided to go ahead with the procedure. I had just seen my doctor, after all, and been diagnosed with this virus that was going around. Ultimately I do believe that the prep for the procedure played into the development of sepsis, since the gut biome has a lot to do with whether bacteria passes through into the bloodstream and triggers the sepsis response. Three days after that, I still felt bad. I was cold, tired, and spent. I went to one of those drugstore doctors on Saturday. She listened to my lungs, checked me for influenza, (negative), started to give me an antibiotic but decided not to, diagnosed me with a mild virus, told me to take Monday off and rest for a couple of days. Not one of these practitioners thought my lungs sounded bad, or required a follow up x-ray. My point is not that they are bad doctors, but that signs are so easily missed.

I wasn’t going to take that Monday off. I didn’t really feel any worse than I had for a month so I was going to push through another day, but I was so tired and I had a doctor’s note, so in the end I stayed home. (The previous night, I was shuddering so violently from the cold that the bed shook and woke my boyfriend. I learned later this is a sign of sepsis). I was mostly eating liquid foods, broth, soup, water, but I felt so dehydrated. When I pulled the skin up on the back of my hand it stayed there, in a peak, not bouncing back. I thought of a friend of mine who had been hospitalized for dehydration and decided that was what I needed, a boost of fluids to help me feel better. For whatever reason, I just wasn’t taking enough in. I texted my boyfriend that I needed to go to the ER.

When he got home later, I was almost unable to move. I’m not sure I sat up on my own. He had to help me change into jeans and we decided just to leave the pajama top on because it was taking too long. From the bed to the car I had to rush to the bathroom three times and then threw up almost as soon as the car started to move. The fluids I had been taking in didn’t seem to have gone into my body at all.

There at the hospital, there were no chairs at the admitting desk so I collapsed onto the floor. They rushed a wheelchair over and propped me in it. I wanted so badly to lie down. I was cold and unable to hold my head up straight. The waiting room was full, but they rushed me through the admitting process. I was glad because all I wanted was a bed.

They took me into an exam room and did some tests. The thing I remember most is that the nurse couldn’t get my blood pressure. She put one of those cuffs on me and inflated it twice. Both times it sent an error message and gave up. The third time the cuff exploded on my arm. My blood pressure was so low it broke the machine.

She decided, because I kept asking to lie down over and over, to put me in the room they had for me and let me lie down, and she would take my pressure again. I was so grateful to lie down. At that point I was barely responsive, every word I spoke took a full exhale of breath to get out, I was cold and gasping for air. I was pretty much an unmoving, non-participating observer from then on.

The nurse took my blood pressure, exclaimed “OH!”, left the room. I heard a code called. The room exploded with people. There must have been ten of them there, nurses and at least one doctor. They massaged my limbs, put a heated blanket on me and wrapped my hands and feet in heated pads, asked me who and where I was. They hooked up two antibiotics, fought to find veins to stick IVs into (generally, the veins in my arms are visible and pronounced, easy to find and easy to hit with a needle), sticking my hands, arms, neck. I believe this team of people saved my life, my hands, my feet. I was ultimately diagnosed with pneumonia, a collapsed lung, sepsis, and adenovirus.

I was in the ER at Johns Hopkins Bayview, and I mention that both for the shout-out, but also to let you know that this team knows what sepsis is and how to treat it. So many people I have met who have survived sepsis have lost limbs and the effective function of organs. They thought my kidneys had failed, which later turned out not to be true, but I have since learned that they are not out of the woods yet. Sepsis can have very long term effects.

Sepsis. I didn’t hear the word until later. I wasn’t really aware of it until after I was out of the hospital and looking over my records. I didn’t understand the impact of it until I sat in front of the pulmonologist my GP sent me to and he told me that when he looked over records like mine he rarely saw the patient again, because he’d be signing off on a death certificate. He was amazed at how well I was doing, so much so that he didn’t need a second visit for discharge. Over and over again, he told me I was lucky to be alive. He told me I went back to work too quickly. (I wish I’d seen him before that decision was made and taken a week or two more, but oh well.)

Sepsis changed me. I am a different person than I was before, and am learning more about her every day. I have brain damage, very common for sepsis survivors. Cognitive changes, difficulties with language, inability to focus or wade through any large input of information from an over-decorated wall to a crowd at a supermarket, I don’t sleep well, I still experience weakness and less energy than I am used to. It’s called Post Sepsis Syndrome, and it’s a thing. But I am so grateful to have my limbs and mobility, to live without medication to supplement organ functions. I’m still finding out things like whether or not I will be able to do my job, how to document that I have fed the dog and cats or taken my meds every day, what kind of planning calendar will work for me now that my memory can’t be trusted.

Sepsis is not a disease. Sepsis is the body’s overwhelming response to perceived infection, when the immune system begins to attack organs along with just about anything else it encounters. Any infection can result in sepsis. I have met people who got sepsis from a tiny nick in the finger from a ring, from IV sites that got infected, from pneumonia like I had, and simple UTIs. Some early signs include violent shuddering, a rash that doesn’t blanch when you push on it (I had that, but my allergies often present as a rash so I didn’t think it was odd), rapid breathing, low blood pressure, confusion. Any person, with any infection, can develop and die from sepsis. I have met people who have lost infants, children, partners, and parents. Many never heard the word sepsis until these deaths were being explained. It won’t be listed on a death certificate, either. That will show the primary cause of infection (in my case, that would have been pneumonia).

It is sepsis awareness month. Learn the symptoms and don’t be afraid to ask health care professionals to check for it. They don’t all know to be on the look out, as evidenced by the number of deaths from sepsis every year. It is treatable, the earlier the better. The team that treated me gave me two antibiotics as a precaution as they waited to find out which would treat my own infection. That is not standard practice at many hospitals so you should know to advocate for it. I hope that my story helps you plant the word sepsis and its symptoms somewhere in your mind that is accessible when you need it. Awareness saves lives. It’s as simple as that.

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