This past week has been a whirlwind. Being on immunosuppressive therapy, I am advised to visit my doctor any time I get sick, even with the common cold. So when I came down with a fever, I called my rheumatologist who advised me to go see my GP for examination as soon as possible. The earliest I could be seen was the following morning. No big deal, it’s just a fever. I’ve had fevers throughout my life. It can’t be that bad. I wasn’t even through my loading doses of the new treatment, so surely I wasn’t fully immunosuppressed yet, I thought.
When I arrived at my GP’s office, I was so dizzy my husband had to support me as I walked. I had no energy and basically handed over my phone with my documented list of symptoms. My GP took one look at me and said, “Oh, Steffie. I’m wondering if I should just send you to the ER for IV antibiotics.” I begged her to let me go home. She wrote me a prescription for oral antibiotics and said if there’s no improvement within 24 hours I need to get to the ER. She made me promise her. “I promise!” Jokingly I asked, “Am I dying?” She chuckled and said, “No, you’re not dying. I know it may feel like it, but you’re not dying.”
Keeping my promise, I headed to the ER that night as symptoms had progressed despite three doses of antibiotics. Within 24 hours of my fever starting, my face, ear, lymph nodes, and neck were swollen and red. I knew the quick progression of illness was due to being immunosuppressed.
We all know that getting treated in the ER usually takes hours. The waiting room was quiet. I was quickly called into triage where I told the nurse that I’m on immunosuppressive therapy to treat Ankylosing Spondylitis. After checking my vitals she asked, “What’s that thing you were diagnosed with? How do you spell it?” She had likely never heard of AS or the medication I was on. It was disheartening. My autoimmune condition is invisible even to people in health care.
I checked online and the average wait time to see a doctor that night was just over two hours. Within 45 minutes of being admitted, I was in a private room, seen by two doctors, hooked up to a heart monitor, had blood work done, an ECG done, an IV line in, and sent for a CT scan. One of nurses (that’s right, I had more than one), told me “You’re very sick.” I thought I am? When I saw that my IV monitor read critical care I began to panic. I asked myself again am I dying? I am so thankful that every time I looked up, my husband was right there looking back at me with his calm demeanour and reassuring eyes.
I had barely settled into the oversized blue gown before the CT scan results confirmed diagnosis of bacterial parotitis. This usually just involves swelling in front of the ear. The fact that my head seemed to have blown up was really concerning for the doctors. I was told due to the fact I’m on medication that “does all sorts of weird things to your immune system, we’re going to keep you overnight.” The ER doctor gave me three rounds of different antibiotics. An additional IV line was ordered for simultaneous dosing, but my vein “blew up” according to the nurse.
When the infectious disease specialist saw me in the morning, he commented, “Wow…look at you. You’re not going home today. Sorry.” Bag after bag of IV fluids and medications I couldn’t pronounce kept me bound to the hospital bed. By the end of the second night, I was being transferred to a ward. When I was brought to the room, it was shared with four other people. My direct neighbour had a droplet warning sign and was coughing up a lung. OH NO WAY!! Nuh uh!
I told the new nurses I’m immunosuppressed, what treatment I was on, and my diagnoses. Of course they looked me at me with wide eyes, which I translated to “what is she talking about?” One nurse argued “your blood work actually doesn’t indicate that you’re immunosuppressed. We don’t have any other rooms.” Did he think I was just making it all up?! I spoke to the supervisor and got myself a room in isolation, all by myself! Phew. Friends, advocate for yourself and for your health. Know every prescription you are on, the mechanism of it, and fight for your rights! I didn’t care what my blood work looked like. Whatever that neighbour dude in the next bed had could have given me something worse than what I was fighting. No thank you!
Three nights and two days in hospital was my time served before I was released as an outpatient. I was to return each day to receive IV antibiotics, which meant I went home with a souvenir, the IV line still in my arm. Have you tried to parent a toddler with an IV tube in your arm? I don’t recommend it. “What’s that? What’s that, mommy? Mommy ouchy,” and then she proceeded to smack it out of curiosity.
Twelve rounds of IV antibiotics and I was finally discharged from outpatient care after seven days of treatment! I am now currently transitioning into 10 days of oral antibiotics. I’m not out of the woods, but there is light again.
After I returned home, my GP called with some lab results (on a Saturday). She was the one who pieced it all together (I love her). What common diagnosis landed me in the hospital? I had strep throat! Even though I was still non-symptomatic, the bacteria had travelled from my throat, up into my ear, ruptured my eardrum, and infected all the surrounding tissues. I have now experienced the full effects of having no immune system. The progression was rapid.
I am so thankful for all the support that I received. I am grateful for a medical system that allowed me to get the critical care that I required, for amazing nurses, for nurses who reminded me to stand up for myself, for doctors who made me laugh, for doctors who acted quickly, and for all of your messages on instagram that helped me survive the hospital stay. Above all, I’m thankful for my parents who watched the girls 24/7 and for my husband who never left my side, even when I encouraged him to go sleep at home. Brian helped me keep my mental health in check so I could keep fighting and I am so grateful to have him in my corner.
When I experience a flare, I am usually really hard on myself, especially on my body. I blame my body for betraying me and letting me down. There was a shift this time. In the chaos, I told myself that I’m fighting (body, spirit, mind, heart – all in). I’m not finished is what I heard an internal voice repeating. There is more life to live and I’m thankful that I still have the opportunity to do more while I’m here. I felt so much adversity in the hospital and I simply repeated not today. I’m not finished. Not today.
I’m not sure what trial you face today and I do not know your struggles. But I do know one thing, you are not finished. You have more life to live. Give breath to the areas in your life where it is needed. I’m breathing with you. You have purpose and worth. You are not finished, not today. Battle on, friend. We’re in this together.
With Love and Light,