It’s a Hard Knock Life

I love and appreciate my Peripherally Inserted Central Catheter (PICC) line. It keeps me fed and hydrated and is increasingly a source of meds as well. But I never named it because it was always supposed to be temporary. But almost two years later, clearly it had some staying power.

But unlike my G/J tube, which allows me to put in anything that can go into the stomach or intestines, A PICC line is a catheter that goes directly into a large vein, so I need to be much more careful with it.

When I first got my PICC line and was trained on how to take care of it, the training nurse put the fear of god into me that I was never to take a shower for more than 10 minutes. Ever. Or I would end up with sepsis.

Those early showers were fraught with fear and anxiety. I set a timer and created an associated playlist, so I could keep track of time without poking my head out of the shower. At some point, either David or I mentioned the firm 10 minute rule to Jennifer, my home infusion nurse. She said she had never heard of anything like that.

After that, showers became relatively relaxed affairs. I could just pull on my plastic PICC cover sleeve when I went into the shower, and it has always kept my PICC line dry.

Now I am looking at “upgrading” to the tunneled venous catheter, which will sit on my chest. There is no easy sleeve or cover I can buy to cover a line on my chest. I have watched videos of other people covering up their lines and run trials on my own, and I have come to the conclusion that my days of relatively stress-free showers where I can just stand under our lovely rain shower head are coming to a distinct middle. Because once I convert to a line on my chest, it is all about the hand held shower head and avoiding spraying directly at my chest.

I am not happy about this development. As much as I am eager to be rid of the anxiety that one day my stenosed vein will close and I won’t be able to infuse my nutrition or fluids or meds, I just got out of the hospital and am not eager to go back in.

This realization is coming at an already difficult time for me emotionally. I am knee deep in grief over another growing season where I am unable to eat the delicious produce being grown around me.

There are just so many things that make life with a severe chronic illness difficult to manage. Last night, David and I were talking about how exhausted we both are and how much we just need a break from all of the things we need to do to keep me alive and somewhat functional.

Meanwhile, my pain is relatively low, so we both want to take advantage of the opportunity to go do something fun. But the daily regimen remains daunting and the planning needed to just drive to the coast 30 minutes away feels like too much right now.