Wednesday, January 31, 2018

Not If, But When

A repulsive, disbelieving gaze diverted to the lumens dangling from the upper portion of my arm. I never truly apprehended its meaning as the scratchy, repetitive noise of the portable IV pump resonated in my ears. It was a reminder that this was not supposed to happen. Central lines were for the patients who were really super sick, the ones who had exhausted all of their options. That could not be me, could it?

But it was. I was airlifted via Angel Med Flight to a hospital out of state due to uncontrollable, severe reactions caused from God knows what. The first of my countless PICC lines was placed for TPN and high dose intravenous steroids. Oh, and Benadryl as needed. Eventually, we learned my reactions were a manifestation of Mast Cell Activation Syndrome.


Total gut rest on TPN and IV medications lessened the severity and calmed the reactions down. I was later sent home to begin real life with a central line. Suddenly, the horror stories replayed in my mind—sepsis deaths, site infections, blood clots and DVTs. My doctor was less than comforting. He offered no consolations to ease my mind, only risks to stress the seriousness of the situation. While the line was and is 100% necessary to save my life, it could take it just as quickly. He said, "It's not if, but when."

In the beginning, I was meticulous with my line. I knew I had to be. However, I was not over the top. I also trusted other medical professionals with line care. Although I was previously familiar with central line dangers, I never fully understood before my two battles with sepsis. (The first was from a skin bacteria and the second after the clave fell off of my bi-fuse extension). My entire perspective changed. I was no longer meticulous with my own line care, but absolutely anal. And my trusting nature with medical professionals disappeared, as I witnessed some of their mistakes with sterile protocol.

Since then, central lines have continued to be a critical asset to my treatment. I do not tolerate any oral medications and am reliant on continuous infusions. I must live knowing the impending risks of central lines and unconventional treatments like the Continuous Diphenhydramine Infusion, or not live at all. But is life with that kind of overwhelming anxiety considered living?

I recognize the fact that I can do everything correctly and sepsis can still occur. So, when the nurse leaves the flush uncapped a little too long, I kindly ask him to do it again, because it is hard living with the premise, "It's not if, but when."