Prissy, Polly, Molly, Maxwell, George.
You might be asking who the heck those people are. Those my friends are the names of the lines that I've had. Yes, I named them. I got kind of attached. I've had three types of lines. A midline (Molly and Maxwell) is a longer IV that is placed into a vein for no more than 29 days. A PICC line ( Polly and George) is a peripherally inserted central line. I dubbed them my arm noodles due to the long flimsy nature . Finally we have Prissy, the port, which is a central line inserted into the chest. Prissy is the bitch that almost killed me. ( That's a whole other story you can read about in my "Sepsis" blog post from back in Sept.)These lines have been a blessing and still a curse. In my central line I receive normal saline and IV medication on the occasion for the management of my POTS symptoms. This is no way makes me "cured" but it sure makes my life tolerable. The infusions keep my major symptoms like passing out multiple times a day at bay. These infusions keep me vertical in life and human.
Living with lines is tedious with infection risk, line care, and constant maintenance. But I refuse to let my illness win. You know its kind of a never ending job making sure George is happy and taken care of. Once a week I have to make sure that my dressing is changed on my central line, all done as sterile as possibly can be done in your kitchen. Oh, and he's afraid of water. Well on a more serious note, lines cannot get wet due to the increased risk of infection. So its roll upon roll of tape( which I'm allergic to), water proof dressings, and silliness galore. It took us a good few showers to get a system down .
Living life with central lines is an art form all in itself. The learning curve I'm still mastering takes skill no doubt. It takes patience ...LOTS of patience. I cannot just go out and live life without preparation. So many times I have went out and realized my flush was no longer sterile or forgot a green cap. It happens. I'm human. In order to alleviate this I became prepared. Extra supplies are now a must. At any time I have a minimum of the following on my person:
four saline flushes
two heparin flushes an ungodly amount of alcohol
enough green curo caps to supply an army
full dressing kit
Now in my car I have another entire arsenal in my fashionable sparkly caboodle. You learn to slowly become that packrat of crazy supplies. But let's face it. Shit happens. I just want to be one step ahead of that storm.
With infusions I have become Dora the Explorer. Usually an IV needs to be done on a pole where gravity can help do the job, but that isn't always the care. At any time I can be found with my galaxy backpack, infusing on the go. I have a portable pump which allows the to throw my fluids in a bag and not be worried about gravity to do the job. Since I infuse anywhere from 4-16+ hours a day this is huge for me. This means I have an array of lines ( my central line and the IV tubing) sticking out of odd places while running into Walmart in my latest LLR leggings. I have found tubie clips which make this more manageable. A tubie clip is basically an adult pacifier clip that clips onto my clothes and holds my cords. I have found some different companies that make and sell these, but my by far company is on Etsy, Crafting for a cure co. (craftingforacureco on IG ) This amazing company has given me an array of clips, ranging from pink glitter, to mermaid, and PIGGIES! For those of you who don't know me on a personal level, I have a pet pig and an unhealthy obsession with all things pig. With my tubie clip in place and backpack on I can now spend hours doing things that I would usually have to do dragging a pole.
So let's talk about some fun aspects. Yes, I have caught my line on a door handle. Its like jean loops. You only catch your line when you're in a bad mood. Now blood work can be pulled off of my central line , so very low chance ( if any) of pesky IV pokes. Though home health is on board, I have been taught to access my line and set up and run my infusions on my own . You also get free patdowns and bag searches at the airport or anywhere with heavy security:) This is just a brief overview of managing to live with a central line, but I hope it has opened your eyes. Below I'll post some of my different line photos. I'll insert a lot of spaces if in case someone wanted the cliff notes version and scrolled to the end of this post .
