We recently had the chance to chat with Shannon and hear about her experience of living with a PICC line. We loved her enthusiasm and her feedback and thought that it may be helpful for others in our community to hear from her. Thank you Shannon for sharing your story!
Living with a PICC was not without its struggles. The most pressing for me was that the placement made taping up for showers in a way that allowed me the maneuverability to wash and detangle my own hair quite difficult. Other than that, the biggest adjustment was finding a way to keep the extension from rolling down my arm! (switching from the netting to the Care+Wear PICC line covers solved that problem!).
What did the PICC line still allow you to do?
Attend classes once we had the timing of my meds right! Super important for me, because setting aside the time to listen in lecture is one of the ways I structure my study time!!
On days when I wasn’t having severe reactions requiring medical attention, I could go downstairs and feed myself, and basically just go about my day as usual. Go to campus and spend time in the library, go to office hours, all that good stuff.
I definitely wish I would have known about the possibility of developing allergies to the adhesives in the dressing!! That was the worst!
My dad was fine with it, he’d been taught to keep an IV open in 2005 after my first stint in the hospital, despite that, I don't think he ever dosed me. My mom and sister were both afraid they were going to inject an air bubble accidentally and kill me, despite training and affirmation that it was going to be darn near impossible to do so. My nurse put an extension on so that I could do it myself and they could sit and keep me company. Towards the end, when we were only keeping the line open with saline and heparin, she took the extension off to see if that would curb the irritation.
My fiance was less afraid of bubbles and more afraid of accidentally pulling on the line. This got easier after I switched to the Care+Wear PICC line covers and he could easily spot where not to put his hand.
Honestly, the hardest thing was my doctor not wanting to remove the line until after the infection was clear, even when we’d moved me onto an oral medication I could theoretically have had a reaction to. This meant that instead of just trying to keep the line in and treating irritation from the dressings for 10 days, we had to do so for nearly two months. So even though my skin was ready for the line to come out, not so much the person who would sign the order to DC it.
Originally, I was only supposed to have my PICC line for the 7-10 day course of my antibiotic. Ultimately my line was in for about two months.
I had a PICC line because I am a paraplegic with fairly frequent UTIs over the years, and I finally developed a strain resistant to all oral antibiotics I didn’t have a history of being allergic to.
UC San Diego’s med school has some great resources available online and that’s mostly what I used to educate myself and my fiance.
The covers I have are Marine and Mango, in different sizes because after I stopped the antibiotic and was only keeping the line open, my arm circumference was different enough that the original sized Marine kept slipping and bunching, so I went down a size and got a different color to differentiate them!
Oh man, where do I even start? I love that it feels like a t-shirt and not like medical bandaging. I love the little window that lets me easily see if something is out of place or lifting up on my line. I have sensory issues, so the familiar fabric feeling and consistent pressure from the cover relieved much of the anxiety that came from having something weird on my arm in the first place, and didn’t share the problems with bunching, rolling, and getting the flow stops caught in the weave of the netting. I’ve recommended it to just about every person I know with sensory processing problems because it was such a breath of fresh air.
We're happy that we had the chance to help Shannon and as always happy to share more stories on living with a PICC line. If there is any topic that you'd like for us to discuss, please don't hesitate to reach out to us at anytime at firstname.lastname@example.org.
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