Haley is a 23 year old Georgetown University graduate living in San Fransisco. She is currently being treated for Late-Stage Lyme disease, which she likely acquired at the Age of 11. Learn more about Hayley's complicated PICC Line journey below:
I had two PICC lines over a period of 4 months, and I will inevitably get another one this spring. I’m being treated for Late-Stage Lyme Disease, which wasn’t diagnosed until a year and a half ago, even though I was likely infected at the age of 11 (I am now 23). After 9 months of oral antibiotics, my doctor developed a treatment plan entailing a few different types of antibiotics given intravenously over the course of 4-6 months. A PICC line was my best mode for these medications because it is easily accessible for me to give myself daily treatment.
Having a PICC line certainly comes with its ups and downs, and I had my fair share of complications. I got a blood clot in the arm with the PICC, then had to watch for certain symptoms to make sure it didn’t migrate and cause a Pulmonary Embolism. I developed allergies, and therefore nasty rashes, to the two main types of cleaning agents for the PICC site. My second PICC insertion was a painful nightmare due to my veins constricting and my body not responding to the numbing agent. I got Clostridium Difficile twice, a serious intestinal infection that causes colitis, and if not properly treated, can lead to a colon rupture, bowel perforation and even death. As I attempted to clean my second PICC myself while visiting family for Thanksgiving (normally a home nurse does it), 5 inches of it fell out, so I ended up having to pull the whole 39 cm of it out myself. As a result of all these, I made 4 different trips to the ER.
I knew there were risks, but I figured they wouldn’t happen to me. I wish I had been a bit more realistic with my expectations instead of thinking all would go as planned: smooth insertion, treatment, recovery, and removal.
Everyday life changes a bit when you have a PICC line, but it’s pretty easy to adapt. I got used to it, and my friends and I even named it, we called it “Picky”. Honestly, showering was the most difficult thing I had to deal with everyday – I have very long hair, so washing it with my dominant hand in a bulky arm cast cover was a challenge. And somehow I never remembered to clean that covered arm after I got out of the shower. Gross, I know - I think I’ll blame that on the Lyme brain fog! Another thing that changes is what clothes you can wear – if I was wearing the cover I was provided with, which looked like the Styrofoam covering that comes on apples, I couldn’t wear most of my fitted long sleeved tops or dresses, as they wouldn’t fit over the bandage and covering. Even just the bandage and the line extender without the cover add some bulk to your arm. After seeing the Care+Wear cover up close and personal, I wish I had one during my time with my first PICC lines. My doctor told me I will be getting another PICC in the next couple months to continue treatment, and I’m excited to have something snug to replace the Styrofoam apple cover! I also like that it’s made of an antimicrobial material and has a mesh window to monitor the site, as I worried about infection.
Those inconveniences didn’t bother me too much, but not wearing long sleeves means people see that you have something going on with your arm. Whether I’m wearing the “apple covering” or just rocking the see-through bandage out in the open, people notice. You get some questions. You get many more stares. At the few parties I was able to go to, I got a lot of weird looks as soon as my jacket came off. Some drunk people asked about it, but not in a rude way. And going through airport security can be a pain in the butt (I find it better to explain to TSA off the bat, or get Pre-Check if you can!). I got a pat down and questions every time. Before I had a PICC myself, I thought more people might know what one is, or at least have seen one. Reality check, they don’t. People are usually polite about their ignorance of it, but I got the occasional “What the hell is that thing?” or “Do you really have to wear that all the time?”
As far as the reactions of those close to me, some thought it was gross and didn’t want to look at it closely or watch my self-infusions. Others, who were either fascinated or pretending they didn’t think it was gross to be supportive, sat with me during infusions and asked questions so they could better understand what I was going through. For acquaintances and friends I’m not as close with, the PICC was shocking. They hadn’t realized quite how sick I was, and seeing that I had to give myself meds through a semi-permanent tube in my arm opened their eyes to what I had been dealing with for so long. Some people needed that physical symbol to understand.
From the beginning, I decided not to care what people’s reactions were. Of course I appreciated the support of family and friends, and didn’t mind answering questions. But I decided that I wasn’t going to let my life be further altered by trying to wear certain clothes to cover it up or pretend it wasn’t there. Having a PICC became part of my reality, and I didn’t feel the need to hide it. Plus, it was a necessary part of my long journey back to health. I viewed it more as a badge of honor than something to be embarrassed about, a symbol of what I have gone through and continue to endure. I had a plastic line sticking out of a hole in my arm, how badass is that?
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