“You have sepsis”: scariest words I’ve ever heard. If your immune system is compromised, it’s important to know about sepsis.

Before getting into my personal experience with sepsis, I bet some of you are wondering “What is sepsis?” According to the CDC, sepsis is the body’s extreme response to an infection. It is a life-threatening medical emergency and it happens when an infection you already have triggers a chain reaction throughout your body. Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death. I didn’t really know what sepsis was prior to my experience and since my compromised immune system puts me at risk, I feel like I should’ve been more aware which is why I want to share my story with you.

Here are the signs and symptoms of sepsis taken right from the CDC’s website.

High heart rate or low blood pressure
Confusion or disorientation
Extreme pain or discomfort
Fever, shivering, or feeling very cold
Shortness of breath
Clammy or sweaty skin

You can have one or more of these signs or symptoms. I had one symptom, extreme pain and discomfort, which is why I thought it could simply be my Ankylosing Spondylitis flaring. However, maybe I had other symptoms but since I was unaware of sepsis, I took them for granted.

I’ll never forget the day I heard the words “You have sepsis, we have to operate immediately”. I went to work that day and I didn’t really feel like myself. I had more pain than usual and the intensity and stiffness in my leg and hip was gradually increasing. I thought that maybe I was having a flare up of my Ankylosing Spondylitis it being Friday, last day of the work week, but it felt different because it was mainly isolated to my right leg and right hip and I normally feel pain in my spine and ribs when I have a flare. It was a very uncomfortable drive home. It’s about a 40 minute drive and I honestly couldn’t wait to get home. I started to realize something was terribly wrong.

When I got home, it was time to get ready and go to my son’s baseball tournament, but I couldn’t. I was sitting on the couch and I couldn’t lift my right leg. It was dead weight. I was terrified. I didn’t know what was happening to me. I went straight to the hospital and I was admitted. My blood work was off the charts but I had no fever which was puzzling so the doctors started running tests. They had no beds in the hospital (unfortunately this isn’t uncommon) so I waited in the hallway on a bed. I was in a lot of pain so they gave me morphine and an anti-inflammatory. I remember not being able to eat because surgery was still a possibility so all I had were ice chips to suck on and luckily hospitals have the best ice chips.

I was alone. I was in a hallway. I was potentially having emergency surgery any minute. I was scared. I waited all night while they ran one test after the other. I was on some serious pain meds so I was in and out of consciousness. I would get a test done and they would wheel me back to the hallway. The hallway was so busy and loud. I couldn’t relax at all. The first test they did was an x-ray. The x-ray showed arthritis in my right hip. This however did not explain my symptoms, but demonstrated that my Ankylosing Spondylitis was progressing. The doctor decided to do a CT scan of my right hip. The CT scan demonstrated fluid in my right hip which also isn’t completely uncommon for someone with Ankylosing Spondylitis. This still wasn’t enough to justify my symptoms. The doctor decided to do an aspiration of my hip under ultrasound. The orthopaedic surgeon was called in in the middle of the night. I finally got moved to another area where there were beds separated by curtains. It wasn’t a shared room because there were many beds. It was a large space and everyone seemed to be staying there temporarily. I figured out that it was a pre-op area. The orthopaedic surgeon came to see me and stated that the fluid was infected. I had SEPSIS! He told me that he would have to operate in 15 to 20 minutes. I was going to have emergency surgery for a septic hip. It was happening.

That’s me in the hallway and where I stayed my first night in hospital

I didn’t want my husband and son hanging out in the hallway of the hospital so they reluctantly left me alone. But when I heard that I was having surgery, I asked for a moment to speak to my husband and he came to the hospital right away. I didn’t have time to see him in person, that’s how fast it all went when I got the news. We said our “I love yous” on the phone and I was rolled into surgery. I was in tears. I remember them rolling down my face. All of these masked doctors and nurses staring down at me with sympathetic eyes. They were so good to me. They were doing their best to calm me down. I remember the anesthesiologist asking me what music I liked. I said “The Beatles”. It was the last band I remembered introducing to my son Liam and that gave me comfort. Suddenly and out of nowhere, the Beatles were playing and I could see the surgeon getting prepped. The song was “With A Little Help From My Friends” which was oddly appropriate. It was a surreal experience and suddenly I was out and then what felt like 5 minutes later I was awake. I was told everything went as expected and that the liquid that came out of my hip was definitely infected and looked like green slime. They also sent a specimen off to try and identify the bacteria so that they could prescribe the correct antibiotic.

I was wheeled into a room with 3 other people. We had curtains, of course. But they were strangers and they were all post surgery and in pain. The guy across from me was literally screaming for help. The lady next to me was whimpering in pain. It felt like the next level of Jumanji. My life got turned upside down in what felt like a blink of an eye. My husband brought me all of my comforts and ordered me TV and that was it. I could barely walk. I couldn’t sit down on a toilet. I couldn’t shower. I couldn’t do much of anything. Try to eat, sleep and take pain meds, repeat. I had a really hard time eating with all of the antibiotics and pain meds. I spent 5 days in the hospital as they pumped me with two strong antibiotics (Vancomycin and Ceftriaxone Sodium). By the end of my stay I could walk short distances with crutches. I could hand wash myself. I could go to the bathroom on a raised toilet. I was starting to see a light at the end of the tunnel.

They ordered me a raised toilet seat for home. A seat for the bathtub. Crutches. I was sent home with an IV in my arm because I was to receive 3 weeks of IV antibiotics daily from home through the LIN. A nurse would come by my house to set up my IV stand for my antibiotics. It’s like we were transferring the hospital to my home. A nurse would come daily to set up the antibiotic. I couldn’t get onto my own bed so my son slept with my husband while I set up my IV in his room and that’s where I slept. I couldn’t do anything with the IV in my arm. Life felt so hard. I couldn’t get it wet so I had to do a lot of hand washing. My husband had to help me wash my hair. I was in pain. It was a new low for me. The lowest I’ve ever been.

My raised toilet seat
My setup in my son’s room

What was worse was that the nurses struggled so much with my IV. They couldn’t find my vein and would have to call backup. One even bent the needle going into my vein which became so uncomfortable that another nurse came the next morning, removed it and showed me the bent needle. The nightmare just kept getting worse. The anxiety I felt around my IV antibiotics was extreme. It was a celebration when a nurse successfully hooked me up which was actually quite sad given how sick I was. They finally gave up and scheduled a PICC line appointment. A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. It’s a device that is ready to receive an IV line which eliminates the need to constantly have to insert a new IV. I really wasn’t looking forward to this appointment but I had to be able to take my antibiotics.

This is how my IV stayed. The nurse would come and hook up the antibiotic to the open end.

The day before my appointment, I had developed a rash and hives all over my arms. The appointment was cancelled and the hives quickly spread all over my body. My Infectious Disease doctor decided to take me off of the IV antibiotics because I was having an allergic reaction to them. She then put me on Levofloxacin, an oral antibiotic, and my lip swelled up along with hives all over my legs. I ended up in Urgent Care. The doctor through consultation with an Infectious Disease doctor decided to take me off of the Levofloxacin and put me on another antibiotic called Doxycycline. A week into the Doxycycline, I experienced severe nausea, vomiting and chills. This was a gradual reaction that was building throughout the week. I was taken off of this antibiotic and I was only able to complete 3 weeks of antibiotics rather than the minimum 4 weeks that was in the plan. This was yet another worrisome part of my septic hip surgery. My inability to tolerate antibiotics due to allergic reactions created a serious risk for future infections and my ability to fight them. Another scary reality that I now have to live with.

Hives all over my body
Swollen lip

I still have a large visible scar on my right leg and I still can’t really look at it. I have suffered from mental health issues since my septic hip surgery. I have a lot of anxiety when I get my infusion because that’s where my doctors believe it all started. That’s why in my previous post “Going to an infusion:What to expect”, I talked about watching the nurse insert your IV. I tend to look away and I just can’t afford to anymore. The site has to be cleaned with alcohol and then the needle must be inserted after that. No fanning to dry the alcohol faster, no touching the arm to locate the vein again, no tapping the vein. It has to be alcohol then needle. Exact words of my Infectious Disease doctor and I plan to listen to that advice. I hope you do too.

I wanted to share this experience with you to bring awareness to sepsis, the signs and symptoms, and its devastating effects.

If you found this post useful, I would appreciate a like and a follow 😊.

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