blood in the line- the first iv infusion sequel.

March 23, 2012

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 in 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.


4 Responses to “blood in the line- the first iv infusion sequel.”

  1. Lyme Mom said

    Wow! What a story. I am so sorry you had to go through that. I am also grateful that you shared. After treating late-stage chronic Lyme for 2 years with little progress my 18 year old is getting a port later this month. I thought I was prepared. After your post I can totally see me doing the same exact thing! Only difference is that I would be doing it to my daughter and not myself. I have a lot to learn. But what I learned from you today is that this is a serious and potentially life-threatening situation and now know that I need help and shouldn’t play SuperMom! Best wishes in your treatment journey. Thanks for sharing!

    • i’m so sorry that you and your family are going through this. i often think that this process is harder on my mom than it is for me. i think it’s great that you’re out here, getting as much information as you can to support your child. it’s a hard world to navigate, to get answers and solutions. it’s frustrating and scary. try not to worry about administering the ivs. after one or two of them, you really do get the hang of it. i’m thinking of posting a video of how to administer the iv antibiotics and also how to change the dressing. i wished i could find a good instructional video when i was bumbling through my first week of treatment. i’ll try to put one up soon.
      i’m wishing you and your family all the best and i’ll keep you guys in my thoughts.
      good luck! your child is lucky to have a mom who is invested and proactive.
      in peace,

      • Tim said

        Thank you for your post. I am currently undergoing the same IV treatment at home and on the same medicine, but for a gi infection post surgery. Your post captures the exact same emotions and questions that run through my mind every time I do this (3 times a day for the next ten days) and I screw some stupid thing up every single time. At one point I left it on open and what is supposed to be a 40 minute infusion took 10 minutes. Of course I was frantic and called the doc. Luckily it was ok but putting meds into your system that quickly could be dangerous. And like you mentioned, the air bubbles! How dangerous is an air bubble and how big of an air bubble is bad??? It seems like no matter what I do I can never get all of them out. But you put it perfectly….I am putting things into a hose that is directly connected to my heart….Just that thought in my head makes makes me mentally incompetent and gives me brain lock whenever I do it. I know this was posted in June so I hope all is well and you got through it just fine. Thanks for sharing!

  2. hi t!
    sorry to hear that you got an infection after surgery. i hope you’re starting to feel better and a little more comfortable with administering your meds at home. over time, i found that i use much stricter protocols at home than they do at the hospital. and i think a little paranoia around home iv use is pretty healthy.
    in answer to your question about air bubbles… it takes a lot of air to cause an air embolism, way more than i thought it would. i read too many murder mysteries as a kid and subsequently believed that a 10ml syringe of air injected right between the toes, where no one would notice, could kill you. i was so very wrong. in most cases, it would take almost an entire iv tube of air to cause serious damage. i mean, i still tap out most of the bubbles in my line (erring on the side of caution), but i’ve learned to let a few of them slide.
    after priming, i run the fluids through the line slowly until it hits the roller clamp. it takes a bit more force to get through that part of the iv tubing, so i allow more liquid in once it hits that point. i turn the roller back down to slow the flow after the antibiotics have run through the clamp. i’ve found that doing this, or just going a little more slowly in general, leaves the tubing with significantly less bubbles.
    i hope that you heal quickly from the surgery and the infection. after the fifth day, you’ll feel like a pro (or a fraudulent pro- someone who knows what they’re doing is fine but is pretty sure they aren’t really doing it exactly right. that’s where i live).
    best wishes for a speedy recovery!
    in peace,

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