I had mapped out the game plan repeatedly in my head. And you know what? Things always went smoothly. I had my emergency plan in place and I was prepared.
I learned that no matter how many times you have practiced you cannot control the world. Remember those fire drills you had in school? Pretty routine and everything always went smoothly. But if the school was actually on fire I bet it would be pure chaos. That’s how I felt.
So here goes my story about my first infection while taking a biologic. I have lost count of the number of times I have relayed this to doctors (yes it is plural), nurses, residents, the biologic helpline, family and friends. And now I share it with you, and I’m guessing you probably have a better appreciation for all the emotions that I had during this landmark moment in my life.
It was a Thursday, my designated day for my weekly injection of Orencia. It was also the Thursday before Good Friday. It was a long weekend, and even my folks were making the trek to visit us. I felt good, I did my usual pretests. How do I feel? How’s my heart rate? What’s my temperature? It was all good. So I did it! I injected.
In fact, I even noted at the end of the day how good I felt. I had something I hadn’t had in a while. ENERGY!
I even tweeted about it!
Near bedtime, I started to get the sniffles. It’s springtime and pollen is in the air, so I really believed it was just my seasonal allergies.
I woke up the next day, Good Friday, and had a huge headache and it was definitely not allergies. It was a stupid cold (so I thought). I took some Tylenol for the headache and just took it easy until my parents arrived. Around lunchtime, I started to get the chills. So I did what any paranoid immunosuppressed patient does, I took my temperature. Hmmm…. It was approaching 38oC, I’d better keep an eye on that. I continued to check my temperature and my temperature continued to rise, eventually I passed the magic number of 38oC. Of course, it was a statutory holiday and calling either the family or rheumy doctors was out of the question. I called the Orencia helpline and they had also taken the day off. Great. By then my parents had arrived. I didn’t know what to do. My mom made the decision for me. We were going to emergency.
I was evaluated by the Triage nurse. I explained that I wasn’t sure if I should have come in. My temperature had come down a bit to 38.2oC thanks to Tylenol and Advil but my heart rate was 157. Ok, I naturally have a fast heart rate but even that was high for me. She clearly indicated that I had made the right decision to come in. No waiting room for me, I was going straight in.
I was immediately given an EKG to test my heart and then hooked up to a heart monitor, had my blood pressure and temperature measured regularly. I was given IV fluids and antibiotics as a precaution and blood was taken for tests and cultures, I peed into a cup, had a chest x-ray and a full examine. (Unfortunately, I was all too familiar with this drill because I had a serious postpartum blood infection that resulted in being stuck in the hospital for a week when I had newborn twin babies at home - but that’s another story. That was before my days of RA).
The doctor said he understood the seriousness of this because he had a friend that was on a biologic that had a near fatal infection. Great that he understood. Near fatal? Did I need to hear that? He was not going to let me go home until he felt confident it was safe to do so. So I spent my Good Friday, on a hospital gurney with a colourful mask on, waiting.
He asked what I wanted to do. I said I really didn’t want to stay in the hospital on a bed that was KILLING my joints but on the flip side, I didn’t want to go home and end up back at the hospital worse than I had started.
Hours and hours went by. My heart rate calmed down to a more normal rate. My temperature came back down to normal (thanks to fever reducer meds). My blood work looked fine. My x-ray appeared clear. The ER doc called the internal medicine doc on call and he said it was likely a virus. I hate when they say ‘it’s just a virus’. Viruses can be scary, and are often hard to treat. I know I used to teach university microbiology. Everything looked stable so I was to be discharged but to return if my fever went up again or if anything new arose.
I think I got home around 11pm. Curled up into my own bed and went to sleep. I was exhausted. Around 3am I woke up to those same chills. I checked my temperature and it was still fine. I went back to sleep. Around 5am I woke up and was SO nauseous. I took my temperature it was 39oC! I woke up my hubby, and he said we are going back to the ER! Thank goodness, my folks were there or else we would have had to drag the kids to the hospital too. I puked the whole way to the hospital (a 20 mins drive).
Although I got in to an examination room immediately, my experience this time was VERY different. New staff. The nurse took some blood. The doc came in and told me that temperature is just a number. It’s no biggie just go home and take some Tylenol or Advil. But… but… but I’m on a immunosuppressant! It’s not just a number! She made me feel like I was over reacting. But I was following everything I had in my emergency plan and the doc the previous day said to COME BACK if things got worse! With my mouth dropped to the floor, I felt I had no choice but to go home. (Of course, my hubby had stepped out at that moment and I had no one there to help defend me. Coincidence?).
So I went home. Happy Saturday. I spent all Saturday and Easter Sunday in bed popping the maximum dose of Tylenol and Advil. Checking my temperature continually and guess what? The fever was STILL THERE. After all it is JUST a number! I pretended to eat Easter Dinner. Aren’t you glad you came to visit, Mom and Dad?
Easter Monday rolled around and the Orencia helpline was now open. I could speak to my caseworker. I explained all that had happened. How the attitudes of the doctors had been vastly varied. I still had my high temperature and I was already taking the maximum Tylenol and Advil. And now I had developed a phlegmy cough. She said try calling your doctor’s office (fat chance they will be open) or go back to ER. With the doctor’s office on an extended weekend, I had no choice. Back to the hospital I go. Trip #3.
This time they made me wait in the waiting room. I went from being told we don’t like people on biologics with an infection hanging out in the waiting room, to you will sit in the waiting room until we are good and ready for you.
When I finally did get into an examination room I had more blood work done. The doctor came in and examined me. He listened to my lungs and did blood work. (Doc #2 didn’t do any of this - LAZY). He said he could hear something in my lower right lung. He sent me for a chest x-ray while he went to the lab to check the cultures from the samples collected on Friday.
Bacterial Pneumonia! X-ray confirmed it. A Rx for antibiotics was in order and if my temperature wasn’t gone by Wednesday I was to return.
You can’t have FAKE Pneumonia! I TOLD YOU SOMETHING WAS WRONG!
Unfortunately, I’m allergic to the antibiotics that are easy on your GI tract, so for the next 10 days I would be enduring stomach upset, nausea and the worst taste EVER in my mouth. Despite the fact that I had no appetite, my fever was gone by Tuesday.
I was on the road to recovery.
I had my regular bimonthly checkup with the rheumy that Friday (great timing, eh?). So I had copies of all my charts from the ER ordeal.
I asked her opinion. This is what I did. But what SHOULD I have done? She said I was absolutely correct to demand they figure it out. You do not mess around with an immunosuppressed patient. She asked if I stressed that I was on a biologic. And I assured her I did, OVER AND OVER. Let’s hope it never happens again, but if it does she told me to DEMAND they call the RHEUMATOLOGIST on call. She was not pleased with the lack of action by doc #2. It is NOT just a number.
So after I finished my 10 days of the worst (but greatest) antibiotic ever, I had to wait out a couple more weeks before I could start injecting again. And can ONLY do so if I have NO signs of infection.
I’m clear to start this week again.
So I had to adjust my Emergency Preparedness Plan. Don’t mess around. Never ignore a fever. Remind the doctors that you are on a biologic and are immunosuppressed. Get the opinion of a rheumatologist. Don’t mess around, if you think you have an infection and it’s not getting better SEEK MEDICAL ATTENTION even if the doctors just think you are “just overreacting”. It’s your life, not theirs.