Sepsis. The word makes everyone in my home edgy. It brings back frightening memories and there is always the lingering fear it will return.
Before 2012 we knew little about it. I was familiar with a bit of the terminology but I always envisioned it as being exclusive to the elderly. Unfortunately I become well acquainted with sepsis, on more than one occasion. That being said, knowledge is power and after our first experience with sepsis, that knowledge saved my life the next time it came around.
My first experience with sepsis was in May of 2012. I have dealt with liver disease for many years and was on a treatment regime that involved cytotoxic medication that suppressed my immune system. (Sepsis and Impaired Immune System) A soft tissue infection developed in my lower left leg and would not clear up. It took weeks of IV antibiotics and eventually I had a picc line put in as I was going into the hospital twice daily for large doses of vancomycin.
I thought that the fevers and chills were from the leg infection. I had been ill for weeks and had a temperature that was going up and down. I would get up in the morning and go to the hospital for an hour and a half of antibiotics, go home and lay down and go back twelve hours later for the next dose. That’s all I could do. I was too weak to handle anymore. I actually felt like I was slowly dying. My best friend and soon-to-be boyfriend had come to sit with me for an evening dose and I finally confided that I wasn’t sure I had it in me to keep going. I didn’t know if I’d have the strength to return for the morning IV medication. He knew something was dreadfully wrong with me and that I was getting weaker every day. He pulled aside a nurse and insisted that the resident at the hospital that night see me. When he left I was awaiting the doctor. By the time he returned the following afternoon much has changed.
I was fortunate. The doctor I saw was skilled in emergency medicine. Our hospital is small and the local GPs cover the ER with the exception of two ER specialists who work strictly at the hospital. The doctor asked many questions, about the infection, about the fevers (which ironically I didn’t have at that point) and about things such as urine output. He had a chest X-ray done and ran blood work including cultures. While awaiting the routine lab results a nurse came to check on me. My temperature had gone from normal to 40.3 C (104.5 F) in an hour.
I was admitted, immediately put on IV fluids and had additional antibiotics given. I remember the chills and shaking so bad it hurt. Thanks to this doctor treating me as though septic even before cultures came back, I made it through. My white blood count and neutrophils were so low I was put on reverse isolation. I remember the following day my friend came to see me, and he had to put on a gown, mask and gloves before he could come in. It was terrifying that all of a sudden I was so sick I had to be isolated. I ended up with multiple strains of bacteria and a fungus in my blood as apparently the picc line became contaminated. (Sepsis and Invasive Devices) It took numerous different antibiotics and a strong anti fungal to get rid of it. It was a lengthy hospital stay but I came through it, weak and exhausted but ok. (Sepsis and Fungal Infections)
I took things really easy for the month after that. I had to. I was struggling with fatigue, poor concentration and felt generally crappy. I can’t really say if it was due to the sepsis or because I had resumed treatment for liver disease. The medication side effects were flu like and it’s hard to tell when something is wrong when you already feel sick from drugs. But I honestly feel sepsis made me far worse.
I thought things would return to some form of normal. I was mistaken. Towards the end of June, just a month after getting out of the hospital, I had another infection in the leg. We immediately started the big gun of antibiotics, vancomycin twice daily by IV on an outpatient basis. So once again I was at the local ER every twelve hours for medication. I have really bad veins so it often took several tries to find one. I felt sick and exhausted but I really couldn’t tell if it was the weekly injection or half dozen pills a day for liver disease, the infection or the fact vancomycin generally makes a person feel ill. But this time things hit very hard and very fast.
I remember the day I went from sick to septic with extraordinary clarity. It was June 30th, national cheesecake day. I’m an avid baker so after the morning IV dose I went home and God only knows how, but I made my boyfriend a cheesecake. We laugh about it now, that even half dead I would cook for that man, but the reality was that is exactly what happened. I was dragging myself around the house and it took all I had. I was getting weaker and weaker throughout the day. Not just tired but actually weak. He came over after work and had a piece and noticed I was not doing well. It hit fast. I went from weak, tired and feeling ill, to suddenly so weak I couldn’t stay standing. I had to lay down or I would drop. He took me upstairs and I basically crumpled into bed. Then the chills and shakes hit. I just laid there and shook. I was in a great deal of pain and horrifically cold. Every joint in my body felt like it was going to explode and I couldn’t get up on my own.
Knowing what sepsis was, he immediately got very worried, Googled the symptoms and checked my temperature which was well over 39 degrees (102.2 F). He insisted we go to the hospital right away instead of waiting until later in the evening when my meds were due. I couldn’t do it. I was too cold, I couldn’t stop shaking, I couldn’t move. He was adamant and refused to let me sleep. He half dragged me to the car and drove me straight to the hospital. It was a different doctor on this time. The chills had subsided by the time we got to the hospital and the doctor didn’t seem overly concerned. My boyfriend was insistent that I be kept overnight. The doctor said he would consult the on call infectious disease specialist at the bigger hospital and we would go from there. Interestingly enough, part of why he wasn’t overly concerned was that I had a white blood count of 5.1, which is in the normal range. We had to explain to him that I was on drugs that suppressed bone marrow and my count should have been much lower.
He compared results from the day prior. I had been at 1.5. After seeing that, he started to take things far more seriously. I was given my nightly vancomycin dose while we waited for the specialist to answer the page. My boyfriend sat with me for hours, but eventually went home to get a little sleep. Shortly after that the specialist called. I was given an additional bag of antibiotics and told to go to the city to see the specialist at nine in the morning. As it was after one a.m. at this point, I asked if it would be ok if I slept there until morning when I could get a ride home. I was told that would be fine as long as they didn’t need the bed. Looking back, it was ridiculous I even had to ask. Had I left I would be dead. By 2:30 I was throwing up violently and my temperature was spiking again. A nurse came in to take my vitals and I remember her looking at me sadly and saying she didn’t like what my organs were telling her. Shortly after that another nurse, this time a tall gentle male, came to start a second IV line. As I had been there on and off for so long the previous few months it was general knowledge that it was a challenge to ever find a vein. I asked why another IV and he said that I was very, very sick and we needed a second line to get more fluids in me faster. I’m not an overly religious person but I remember him saying with God’s grace we could get one started. And he did on the first try. That in itself was nearly a miracle.
They moved my bed to another area, one that was equipped with a cardiac monitor. My blood pressure was quite low. They changed me from street clothes into a hospital gown and within an hour the doctor came and told me I was admitted. Nobody really said what was happening but everyone was different than they had been a few hours before. They moved me once more, into their trauma room. I was beginning to get very scared. They put me on oxygen and put in a Foley catheter. That’s when I was told I was going to be moved to the ICU in the city. But my blood pressure was still dropping. I wasn’t stable enough for transport. One nurse put what appeared to be a cloth bag with a bulb like you’d see on a blood pressure cuff, onto the one IV bag. She would squeeze the bag every few seconds. They explained they were manually keeping my blood pressure up. Things get fuzzy here. I remember the top number being in the forties and the bottom in the twenties. I recall there was a second nurse writing everything down.
I remember being asked if there was someone they should call and nodding as tears started to fall down my cheeks. At no point was there less than two nurses with me, which considering that at a small local hospital which only has three nurses at night and four during the day, is quite a lot. I will never complain about hospital wait times after that. The staff was working hard to keep me breathing. People kept talking to me and I was trying very hard to stay awake. Voices became echoes and there was the steady beeps from the monitor. And the whooshing sound every few seconds as the nurse squeezed the bulb sending a blast of saline into my vein trying to keep my blood pressure up. Dopamine. I remember the word but not much else at that point. It must have worked though as things became less fuzzy for a while and they prepped me for transport. I remember throwing up violently and being loaded into an ambulance. It’s foggy after that. I can recall bits and pieces.
The ER at the big hospital. Being moved to the critical care wing. I was in and out of consciousness for a while. I was completely incapable of moving. I remember my boyfriend bringing my 16-year-old daughter to see me. He told me later that he wasn’t sure what to do but had to make the judgment call. He knew I hated her seeing me sick as it worries her but he felt he had to bring her to me as he wasn’t sure if I would live. God bless that man. Apparently I was inflated like a beach ball. I had no idea. I couldn’t move or even sit up without help. They could not find the source of sepsis that time. Blood cultures were negative likely due to me being on antibiotics. There was no picc line. I had a resistant leg infection and suddenly crashed. It took 11 litres of fluid to resuscitate me. And for the first 48 hours I had next to nothing for urine output. But somehow I was ok.
After the mandatory antibiotic regime I should have felt better. But I didn’t. I have a phenomenal infectious disease specialist. I had horrific back pain and migraines that were insane. I think I had every scan under the sun done in record time to see if the infection had gotten into a joint or the spinal fluid. There was concern that maybe the sepsis wasn’t gone. He restarted the antibiotic regime to treat me as if there was meningitis and had another picc line inserted. I didn’t want to stay in the hospital so we attempted outpatient antibiotics but I was in too much pain. I didn’t want to be admitted to the hospital in the city so they worked with my GP to have me admitted closer to home at our local hospital. I was becoming brutally ill again and this time cultures came back positive. So did the picc line for contamination. It took 21 days in the hospital to get through it this time. The cytotoxic drugs for my liver had been stopped but still my white count was low. I was given drugs to stimulate bone marrow growth.
I was on three IV antibiotics and IM injections of a drug called streptomycin twice daily. It was truly a horrid time. But I got through it. But I was beaten down physically and emotionally. But I finally got to go home the first part of September.
I never really got ok again. I ended up with another leg infection in the fall. But after it cleared up, it immediately turned red and swollen again and the leg never got better. It was determined there was nerve damage and damage to the central nervous system causing a condition called complex regional pain syndrome. Basically my nervous system continually tells my immune system there is an infection or injury in that leg and it turns on pain receptors and swells up. Physical or emotional stress worsen it. If I hurt myself elsewhere the leg swells up and turns red. CRPS is the most painful chronic pain condition there is. It ranks higher in pain than cancer pain, or amputation. It is somehow linked to the immune system. I often wonder if it wasn’t triggered by the mass immune response during sepsis. I now struggle with intense pain and fatigue. My memory is bad. I have a difficult time focusing. I am on opiates for pain control 24 hours a day along with high doses of anti inflammatory drugs and medication for neuropathic pain.
I can’t stand long, sit long or walk far. Because of medication I can’t drive. I am easily isolated as I live in a small town. But I am so fortunate. I was lucky enough to get into the pain management clinic at the university with a minimal wait. I work with a physical therapist and a pain specialist, who makes sure I am medicated enough to function but not so much I’m completely impaired. I have a psychologist there helping me learn how to cope and find new ways of doing tasks that were always easy before. But it’s a long hard road. Many days the pain is still too much and it takes all I have to just get the basics done. I move slowly. Is sepsis to blame? It can’t be proven but they suspect it. I firmly believe it played a definite role.
I continue to have issues with my white blood count being low and neutropenia. This should have cleared up after we stopped the drugs for my liver. It usually bounces back a month after. It’s been over a year and a half. I now have a hematologist following those blood counts and hopefully we can resolve that down the road.
Infections continue to be an issue though not as frequent. In 2012 I had infections requiring IV antibiotics from April until the end of the year with never more than a month in between. 2013 didn’t look promising as I rang in the new year at the ER on IV antibiotics again. But things did get better. From February until September I had nothing worse than UTIs. Good thing as pain was enough to deal with. September brought an arm infection requiring three weeks of IV antibiotics. Another infection in the arm around Halloween brought with it a huge abscess, more IV antibiotics and positive blood cultures again. But knowing now what we do about sepsis, we are vigilant. I’m fortunate enough to have physicians that know my immune system is weak and that sometimes I can go from a mild infection to very, very sick in a short time span. We treat things aggressively now.
I can’t blame all of my current issues on post sepsis syndrome. However I know that stopping the cytotoxic drugs for my liver should have meant an improvement in a lot of ways. With liver disease there was always fatigue and myalgia but nothing compared to now. The pain medication actually makes me faster as every step isn’t so painful but truthfully I’m a shadow of my former self. I can honestly say that many things became much worse after having septicemia and going into shock. It definitely plays a role in my current function levels and I believe it alters the immune response to things.
Perhaps things will improve. Maybe they won’t. Many sepsis survivors feel more limited and even our ability to articulate is affected. It causes self-doubt and makes communicating with the medical community difficult. Our quality of life decreases drastically. However sepsis didn’t win and we are still here. The key now is to not let it own us, to change how we do things so we can continue to function. We may need to do things slower, it may be harder to complete simple tasks. Every organ in our body was infected. It’s normal that our whole lives will be impacted.
I may have to pace myself to get through activities, I can’t stand for too long or even sit for extended periods. But I ensure I get up and do something. I set realistic goals for myself and I work hard to reach them. That goal might only be getting the laundry done and making supper. Some days that is all I can do. My energy levels are low, but I refuse to stay in bed hating my life. It is vital for me to feel like I can accomplish things and to feel valuable. So whether the day is good or bad I get up and do what I can.
I am truly fortunate. I have an amazing boyfriend who supports my endeavors. He knows how hard things are and reminds me not to push myself too hard so I don’t end up worse off the next day. He nags me when I need it, he helps me deal with the scary times and most importantly he loves me regardless of my condition. He is just happy to have me alive, and knowing that I have to work my butt off just to pack him a lunch or make him dinner, he appreciates it and makes me feel like I am still valuable.
I have a wonderful daughter who always steps up to help, who lights up my life. There have been times where our mother/daughter time was simply a midnight happy meal after she drove me to the hospital for IV meds. But she never complains. She inspires me. These two make me keep going when I feel like it’s too much. I have wonderful friends who make sure to visit because they know it gets lonely being stuck home unable to drive. They are there through good and bad and don’t treat me like I am broken. They treat me like I am me.
I have some of the best doctors around, two infectious disease specialists who are brilliant, a hematologist who looks like he is 12 but has an IQ through the roof, and a team at the pain management clinic who don’t just help by medicating me but also provide physical and emotional therapy, and help me to learn how to live a functional life with physical limitations. It’s unfortunate that I receive these services because of a chronic pain condition. I think they should be offered to anyone who suffers sepsis as it makes a tremendous difference in how we can adjust to our new lives.
Sepsis and illness drastically changed my life. I am no longer the independent career woman. I may never be fully physically functional again and that was a tremendous blow to my self-confidence. I now have to look at what I can do as opposed to what I can’t. If I had not received prompt quality care I would have been dead. It was very close. Instead of comparing who I am now with who I was prior to sepsis, I compare myself to the woman laying in a hospital bed having mass amounts of fluid pumped into her to keep her from dying. Compared to that, I am doing amazing.
Knowing the signs and getting prompt care are vital. Had my boyfriend not been adamant about me seeing doctors and insisting I be kept in the hospital, I would have died. It doesn’t matter if you are young or old – I was 37. It doesn’t matter if you are healthy or facing health issues, I had medical problems but many others didn’t, and it doesn’t matter what walk of life you come from. Sepsis is an equal opportunity killer. It strikes out of nowhere and without early treatment it is deadly. Even with early treatment, it can have lasting and devastating effects. You can’t vaccinate for it; you can’t predict it. It can come from a simple scratch. The number one factor in survival is timely treatment. Educate yourself. Educate others. That’s how you beat sepsis