“I don’t think that’s a good idea,” said my mom. “It’s just too easy for you to get an infection.”
“I don’t think you should do it, babe,” said my fiancé. “I mean it’s putting an open line in someone who is immune deficient.”
“No,” said Dr. Santa Maria, “You’re definitely not getting a PICC line.”
But I was hell-bent. Determined. Getting a built-in IV seemed like it would make my life SO much easier.
“But I’ll be able to do my IV’s at home!” I told my family. “Think of how much time I’ll save every week!”
“I won’t have to get pricked every time I go to the ER,” I reasoned. “Think of how much more quickly they’ll be able to give me pain meds when I need them!”
“No more urgent clinics,” I moaned. “Never have to tell my ‘oh I have a rare disease that’s dehydrating and you probably have never heard of it’ story ever again!”
Still, they shook their heads and turned me down for TWO YEARS. It was miserable. Why couldn’t anyone see what a good idea this was? Time saving. Shame saving. Pain saving! A port-a-cath or PICC Line would speed up all the exhausting, boring work of having a chronic illness that was in CONSTANT need of treatment. Maybe the winters were fine, but the summers were becoming so brutal. Instead of one IV a week it was more often two–sometimes three or more!
And not that the pain of needles bothered me after so many treatments, I just wanted more freedom. Wake up in the middle of the night drenched in sweat and totally dried out? Just go downstairs and hook up my IV! Saturday night, want to go out but feeling dizzy and strung out? Just straighten my IV pole up, click on a bag, and by the time I’ve figured out my hair and make-up–all hydrated!
But more than these small, daily saviors– I had much larger fish to fry. My gastroparesis was becoming so all-consuming. My stomach had almost no natural motility. It would stop moving for up to a week at a time. And why? Because I had no hydration to help make any of my motility-improving medications work. And what happens when motility medications stop working for people with gastroparesis?
Surgery. Major, harsh, life-altering surgery.
That’s the gods-honest truth about life-long, chronic digestive diseases. Eventually you develop a tolerance to all functional medications–and then you’re left with nothing but an operating table, abdominal bandages, stumbling around, hanging up signs at the police station asking–“Have you seen my colon?”
And this–if nothing else, finally got my support team to consider the possibility of maybe finding a more semi-permenant solution.
Except they were all still terribly against me getting a Port-a-Cath. If you’re not familiar–a Port-a-Cath is a small medical device implanted just beneath the skin, on your chest. Many patients with Lyme Disease or chemo patients will get this kind of line. This line runs into some major vascular pluming. It’s not just something you mess around with. Get an infection in this kind of port and you’re looking at a very critical situation.
So for me, as a patient with immune deficiency problems–who was extremely susceptible to infections–getting a Port-A-Cath was a phenomenally BAD idea. So we passed.
The second option, which I often rallied for, was called a PICC Line. This kind of line is inserted into a peripheral vein in your arm. It’s a long line that runs right up against your heart. A little less dangerous than a Port-A-Cath, but lets be honest–not by a whole lot. But I knew TONS of patients with PICC Lines, and they were fine (I mean, well, they weren’t fine–they were extremely sick–but their lines made a drastic improvement in their near-daily treatment.) I wanted one.
But my doctor wasn’t having it. My veins were still strong, even after so much use. I could still get a very serious infection if I didn’t keep the area clean. There were so many potential complications.
After a bad–a really bad few weeks my doctor finally went to go speak with the IV Therapy department at the hospital to see if there was a less-drastic option for a patient like me. And lo and behold—
We found one.
The Powerglide IV was semi-permenant mid-cath. Meaning the line opened through my arm, similar to a PICC line, but instead of having a very long catheter stretching over my shoulder and into my chest–it simply went up my arm and ended before my elbow. It wasn’t a forever thing. It lasted between 28-30 days and the dressing had to be changed once a week. With it, I would be able to give myself fluids at home–and boy was I thrilled.
The whole thing happened pretty quickly after that and you might have seen the video I made the day of:
Shit quickly went downhill after that. The first thing that happened was that my arm turned completely freaking black–where they had screwed up the first attempt at insertion:
Then I started having trouble with my insurance company. They couldn’t quite grasp the concept of having the speciality pharmacy deliver tubing and bags of saline to my home. I don’t know why. Surely they do this for a living. But this was just too complicated. To spare me any confusion they promised they were sending out my supplies immediately and that they’d be there on Tuesday…or Thursday..or maybe next week?
On day two I went back to my doctor’s office for my regular IV and a second round of IV antibiotics. I went alone and drove back to my mother’s house, winded and feeling a little tight in the throat. When I walked into the house my mom was like….Whoa, your face is really swollen. And as I looked in the mirror I started to feel my throat get a little tighter.
“I think I need some Benadryl. Like now.”
My mom rushed to grab me some chewable tablets and I knocked them back. She called my doctor who told me to come back in immediately to get checked out. In a panic, my mom drove me back to the office. It was a very stressful day that was just about to get more stressful.
My doctor checked me out and, assured that the allergy medication was working, sent me home to rest. And rest I did because I felt like shit. My bones hurt–both in the arm with the IV and the arm with the black hematoma.
On day three I rested– no fluids, no IV meds. I noticed my IV arm was becoming really tender. I decided to rest it completely, driving one-handed, grocery shopping one-handed. I remembered that the line was supposed to be flushed daily though and after struggling with some leftover flushing syringes from back when I was doing IVIG–R.J and I managed to flush my line–which started to burn, badly.
Overnight I wrapped the arm in a heat pad, took some pain medication and tried to sleep–and the next morning I woke up to a still incredibly sensitive site.
It was back to the doctor to try my IV antibiotics again, this time with a IV Benadryl appetizer. But as soon as the syringe of allergy medication when in I yelped.
It burned unlike anything I’d ever felt before. I continued to yelp, holding my arm and tearing up from the pain. It didn’t help that the medication almost immediately made me start to see double (IV allergy medication–didn’t think through what my reaction would be to that immediately) I felt foggy and tired, but the pain was still there, my arm throbbing from my fingers to my shoulder.
“Ow. Ow. That’s really bad. Ow. Do you think we should call the infusion nurses at the hospital? Is this normal. OW?!”
“Let me flush it, let’s just get the medicine through–that should help clear it up.”
But it didn’t. It just burned again! I howled, bursting into tears, feeling a wave of nausea.
“THAT DID NOT HELP. That hurt! OW!”
My doctor looked over my arm and then went to go get some pure IV water to flush the line through.
“I don’t know,” I mumbled. “It burns. I don’t know if I want to do that!”
I stared at the bag, worried it was just going to burn me all over again. But I also felt really dumb and not able to make good medical choices for myself, and I trust my doctor–so I told him to do whatever he thought was going to help.
The water flushed out the medication, and the stinging pain started to subside. We let the water slowly run through, but after a few more minutes the pain started to return. We pulled out the water line, but the throbbing just intensified. My eyes started to water again. We were approaching Defcon levels of pain here. What-have-I-done-with-my-life pain.
Before I knew it I was stumbling into a wheelchair and being taken across the parking lot to the ER. Miserable, holding my arm up and away from my body in the only position that wasn’t agonizing, I waited for R.J who I’d texted from the office saying to come to the ER–NOW.
Dr. Santa Maria spoke with the ER doctor and they agreed that I needed to get an ultrasound of the line to see what was happening. The doctor asked me if I needed pain medication and I was like–YES. NOW. Twenty minutes ago!
Then I realized, with approaching horror, that I was going to have to wait for oral pain medication to kick in. Because my line was unusable. This was the exact OPPOSITE of my plan. How did things get screwed up so quickly?
They wheeled me down to the ultrasound tech, while the nurse left to go get my pain tablets (Which she only brought mid-exam) the twenty-minutes or so of the tech running the wand over my arm were some of the most excruciating moments in my already action-packed history of ER visits. Every time she pushed inwards to collapse a vein, my vision swam.
They wheeled me back to the exam room. The drugs never really kicking in.
Before the doctor came in we heard him on the phone with the nurse.
“Yes, I gave her the pain medication. Okay–so–alright. So we’re going to take it out then? Alright.”
My heart sunk. Barely a week into my semi-permenant IV and I hadn’t even been able to do ONE treatment at home! What a complete and total failure. I hung my head.
“I’m an idiot,” I told R.J, who UNKINDLY did not disagree. “This is not what I wanted. This was supposed to turn out way different. This was supposed to make things better!”
My arm throbbed. “I just wanted a little more independence. A couple preventable emergencies. This….sucks.”
The ER doctor came in then to tell us that I had a small blood clot, one that for some patients might not even cause symptoms–but lucky for me…. And the point was that they had decided to take out the line.
I nodded, staring down at my arm with huge dissapointment.
But I wasn’t done paying for my ingenuity yet!
Then I had my skin ripped off because (who knew? Not me!) I’m allergic to the clear bandage they put over the whole thing. And so my skin was just stuck to it in a way that bandages are not supposed to be stuck to your skin.
“I’ll do it fast,” the nurse said. And then she ripped the bandage down as far (not very) as she could. Crying. Sobbing. Probably some screaming. Apologies. Scrambling for some weird oily orange solution to soak up the bandage. More screaming. A deep and everlasting hatred for slow oral painkillers. The realization that before the week was over I was definitely going to have two black arms.
To add insult to some seriously still stinging injuries–when we came home from the hospital my insurance company had delivered my bags of saline and tubing.
Just in time.
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