When You Know Your Body Best

Anyone with a chronic illness can probably tell you they know their body better than any medical professional. To say that is true is an understatement. Look at me, I probably knew at age 16 or 17 I had an AI disease but it took years for doctors to catch on. I knew steroids where helping my gastroparesis a year ago but no one really believed me until I was diagnosed with Sjogren's. This is not an uncommon phenomenon.

When I get a fever it only takes me a few hours to differentiate between an autoimmune fever and something more serious. However due to having a port the protocol is any time I have a fever of 100.4 or higher I am supposed to go to the ER. I have pushed the limits on this a couple times, making appointments with my PCP instead of going to the ER or waiting a few hours to see if it will go away. This approach has gotten me a few lectures but never caused me harm since I know my body.

Over the summer there was one incident where I was at work when the fever came on and was unsure of which way it was going to go so I did decide to play it safe and let my boss know so they could get coverage. Since I have been in situations where the first signs of a line infection came on while I was taking care of children and I thought I could push through but it got bad fast so I did not want to put myself in that situation again. By the time I got to the ER I was pretty positive it was not a line infection. However I was put on IV antibiotics within an hour and the jumpy intern was trying to find any reason to admit me he could including almost doing an ultrasound to check for appendicitis. My labs came back clean the fever went away and I was discharged a few hours later. The cultures from my port much have been negative because I was not contacted again and did not get sicker, but I know my body and did not need cultures to know my port wasn't infected.

Fast forward a couple of months and I felt a fever coming on while on my subway ride home from an appointment at CHOP (ironically enough I went on a whole rant about not going back to the ER). By the time I got home and took my temp it was normal so I brushed it off and got ready for Yom Kippur services. After services I was hanging out with a friend on my couch and by 10pm I felt feverish again. This time I had a low grade fever after an hour I knew something was wrong and headed to the ER. Once I got there no one else seemed super concerned about the situation since my fever did not register as a fever according to the ER doctor's definition. As I was there it kept climbing but the ER doctor still said it was low grade and I tried to explain that this was not a autoimmune fever and something was not right. Due to my port not cooperating it took about an hour and a call to IV team to get a culture, delaying any treatment. After much debate about whether or not I needed to be admitted due to a normal WBC and 3 separate fever level temps an hour apart they decided to admit me at around 6 in the morning meanwhile I finally got Tylenol after asking for hours and now shaking with chills. Not a fun night.

The next day (or I guess technically the same day), a few hours after getting to my room I met the attending on the floor. I still had a fever and was feeling quite awful. The attending explained that there was still no signs of infection and they wanted to stop the IV antibiotics they had me on to see what would happen. Well an hour later the Infectious Disease team came to see me, sure enough the port cultures grew in a recorded 11 hours, and to think I was almost not admitted. Of course I hadn't been started on the right antibiotic so we had to switch and my second set of cultures, which also took almost an hour to get enough blood for the cultures which called for a late night IV team visit (I officially know most nurses on the IV team way too well), also came back positive.

I am now out of the hospital and off IV antibiotics finally. This week is jam packed full of appointments during which we will hopefully deal with the bigger issues surrounding the port not working.

The moral of the story is I just need doctors to listen to me! Please don't force me to go to the ER because of protocol but if I do go to the ER with a fever please take it seriously!

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