By Sydna Marshall
I’m a frequent flyer at the ER. I joke that the family who ER’s together stays together. I’ve been there for allergic hives and rashes, infected spider bites and bee stings, a PICC line that upon insertion pierced a lymph node, thereby leaking lymphatic fluid, and intestinal blockages, to name a few. A few of these trips haven’t gone as planned for a variety of reasons—a forced treatment plan when I wasn’t heard as a patient or the astronomical cost of services rendered, later deemed non‑medically necessary by my insurance company.
Several years back, I had what ultimately became my last PICC line placed for home IV antibiotics. I’ve got terrible veins—they’re small, they roll, and they collapse easily. Knowing all this, I always had interventional radiology place my line since it’s much less painful and easier on everyone involved. Unbeknownst to either the radiologist or myself at the time, they nicked my lymph node when they when they placed my line. After seven days of daily dressing changes and sopping wet Biopatches, I checked into the ER demanding that radiology pull the existing line and place a new one. Anticipating this, I intentionally showed up fasting as I would for a scheduled line placement. I spent several hours in the ER with multiple doctors and PICC nurses making their rounds to assess the situation. Ultimately, after arguing back and forth, the radiologist decided that my veinous access was more important and refused to start a new line, instead opting for stitching up the existing line. I was beyond angry. They took me back to IR and began the process of removing the existing dressing, stitching the site together and adding dermabond to further seal the area. Despite protestations of allergic reactions, the IR team cleaned the site with chlorhexidine, resulting in immediate blistering at the site. When the entire process was over, I was promised another seven days without any leaking lymphatic fluid. Sadly, and not unsurprisingly, my line lasted only one more day. After having soaked biopatches requiring two more dressing changes in less than 24 hours, I had my home health nurse pull the line, which was an additional ordeal from the added stitches and dermabond. This entire episode was the catalyst for getting a port placed on my terms before I ran out of options for PICC lines. I’ve never felt less heard as a patient than I did in the ER that day.
A couple of months ago, I drove my dad from his small-town hospital to my home CF hospital, here in Austin since the only surgeon on staff in his hospital was on vacation. While my dad was getting settled into his room that evening, I took a trip down to the ER. More often than not, especially lately, I’m either calling the doctor for steroids or checking into the ER for allergic reactions, which never seem to happen during business hours. Everyone who knows me well knows that I never leave home without Benadryl. I am more or less allergic to life. This trip to the ER was no exception. I had hives spreading to my eyelids and knew it would only get worse.
Like many of us with CF, we know our bodies well. We know what works and what doesn’t. We know what drugs we need more often than not. The ER doctor came in to assess the situation and I immediately went into my story about having hives and needing a steroid shot and taper stat so I could go back upstairs to help my dad. Miraculously, I was in and out in under 30 minutes with both a high-dose steroid shot and pills. Within the hour my hives and redness were receding. It was a relief to not only have a game plan in mind but to be heard as a patient by the ER team.
I’m still wary of the ER, mostly because I worry that my insurance won’t cover anything, even what’s considered medically necessary by my CF team. I’m also a bit gun-shy after catching possibly the worst virus I’ve ever had from an ER visit. As much as I’d love to draw a line in the sand and never set foot in the ER again, I know that’s not a realistic expectation. The next best thing is to keep advocating for myself when I’m there.
About the Author: Sydna is 39 and has CF. She’s the Secretary and Managing Editor for CF Roundtable. She lives in Austin, TX with her husband, Adam, and furbaby, Husker. You can generally find her nose in a book when she’s not in the kitchen. She can be reached at smarshall@usacfa.org.
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