i ended yesterday’s post, mid-infusion, craving cookies and sitting on the couch. if i thought that giving myself the actual iv infusion was scary, what followed next was horrendous. i should tell you, i’m writing this from my inexperience, which made this whole event incredibly dramatic. i also feel like i need to document this because this is the kind of stuff i would like to have read. i want to know what someone else on a similar path has gone through, to give this all a shared human experience.

i spent the next 45 minutes staring up at the iv bag, waiting for it to finish. drawn into some hilarious back episodes of archer (okay, i’m starting to warm up to having cable, or at least to having on-demand and premium channels), i didn’t notice when the bag was finally empty. i stood on the couch and freed my line from my ukulele and headed to the bathroom. while in there, the doorbell rang. without an iv pole, i had to set the empty bag down to sign for some packages. i have become the reason that i use hand sanitizer after touching those door-to-door styluses. king ebi, my ten-year-old ragdoll cat, titled “king” for the week because he clearly believes he has vanquished the dogs and now owns the house, tried to make a pathetic run for the outdoors. his pale blue eyes don’t adjust well in bright light and he made it down two stairs before playing freeze tag and waiting for me to pick him up. by the time i got back in the house and remembered that i was on my way to my sterilized office to unhook my iv and flush the catheter jutting out of my left shoulder, the iv tubing had filled with about three feet of my blood. i forgot to close the valve on my powerline, allowing the flow of liquid to reverse because the iv bag had dropped to the ground, well below my heart (unless we’re speaking metaphorically, because in that case, i was tripping all over that panic-stricken, beating mess). of course, upon seeing that i had done something wrong, my lyme-addled brain completely forgot about the catheter valve.

okay. blood. i can handle that, right? i just needed to disconnect and flush the line. i washed my hands and ran into my makeshift procedural room, unwrapped a sodium chloride injection, unhooked the iv bag, wiped the caps with alcohol swabs and screwed the injection onto my line. when the sodium chloride injection started blossom with my bright red blood, i realized two things, i hadn’t closed my catheter AND i hadn’t cleared the air from the injection. i unscrewed the injection and tried again, but the plunger didn’t budge. i remembered the nurse who taught me how to use my powerline catheter saying, “don’t force it. call us,” so i called them. i got their voicemail. i left a message that said something like, “hi. i’m having a problem with my infusion and i really, really need someone to call me back as soon as possible, please.” this was said as if it was one gigantic, multisyllabic word. then i hung up and stared at the blood pushing through the purple polyurethane tube wondering what to do. what if the blood had coagulated in the line? i mean, there was a pain in my chest. i felt pretty sure that was from anxiety, but what if it wasn’t? what if i pushed it and sent a clot pulsing straight to my heart? what if i screwed up my line and had to have it replaced? should i just use the heparin injection (the anti-clotting agent)? i thought of my phone call options. not wanting to bother one of my best friends while she was at work, i called a family member and confessed that i had done something wrong and needed her help. she calmly asked me a few questions and talked me through what to do. i needed to sanitize the catheter again and screw on another injection of sodium chloride. i did that and forgot, again, to expel the air (there is a part of me that is completely ashamed that i forgot to tap out the air bubbles…). i started over and to my inexpressible relief, the liquid ran in, pushing back the blood in my line. i hooked up the heparin and injected that too. my brain had forgotten more than medical protocol. it had lost the ability to form complete thoughts, so┬áin an exhausted, adrenalized cloud of gratitude, i thanked my nurse/angel and abruptly hung up. immediately after, dr. j’s staff called me back. “it’s okay,” i breathed heavily into the phone. “a friend who is a nurse talked me through it. thank you for calling me back though.” we awkwardly hung up.

diagram of a central venous catheter.

though the staff at my doctor’s office was incredibly thorough in their explanations and demonstration of how to give yourself an iv infusion at home, they only showed us how to do it once. burned out from travel, from surgery, from the fact that i soldiered on with only one functional arm to go buy shit instead of sleeping off the anesthesia, i wasn’t in the best position to comprehend the demonstration. my partner and i did take film and audio of the whole process, but i couldn’t sift through our hours of footage to find the troubleshooting section. much to my shock, i also couldn’t find any concise instructions online when i needed them. as i was frantically inputting various combinations into search engines, the gravity of this central line catheter dropped like a stone into my thoughts. i have a tube that gives something foreign, something external, a direct shot to my heart. there is room for mistakes, but how much room do i have? i need to get this right and i need to take the time to be sure that i’m fully prepared before i try to do anything new.

i spent the majority of the afternoon and evening nursing a migraine headache, trying to formulate a list of questions to ask the clinic infusion team. there are so many things i don’t know, and though i like to believe i have all-knowing superpowers, i don’t. i need help. i need answers and i need to get a grip before i do something really stupid.

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