Experiencing An IV Infiltration

Have you ever wanted to know what a water balloon feels like? Yeah, me either...but I got the opportunity to early on the morning of May 19, 2016. 

I found myself in the Emrgency Room at around 9:30pm because my PICC line wouldn't flush. Erring on the side of paranoid, I went in to make sure everything was alright, particularly since I had been experiencing some chest pain. I didn't get called into triage until after midnight where they asked me why I was there, took my vitals, had me tinkle in a cup (my worst nightmare), and did an EKG. I was sent back into the waiting room with promises of being called back soon for blood work. 

Two and a half hours (plus) passed before I was called back and put into a room. 

Did you see that? Two and a half HOURS! 

When I explained to the nurse that I had a PICC that wouldn't flush and torched veins on the top left hand (so don't touch it or the shoe may fly at your head) and the rest of my veins are scarred (so good luck and God bless on finding a vein), so got her handy dandy ultra sound machine. 

And STILL had a hard time finding a vein!

But she was able to get one, on the WAY interior of my elbow. Once in place, labs were drawn and the wait began...again. An hour later the P.A arrived announcing my D-Dimer test to be abnormal (normal range is nothing higher than 499. I was 552). It was declared that I needed a CT with contrast so off I went. 

The tech hooked me up to the infusion "pump" (think sci-fi syringe looking things that bottleneck into tubing that connect to your IV) and watched as the saline shot into my IV...it seemed sketchy, but he had it continue anyway. As it moved into injecting the contrast it does it at a high rate of speed and it warms the whole body. 

Not for me. 

It infiltrated (the contrast and saline shot into my arm tissue) and caused my arm to swell quickly. Because the test was still going, the tech couldn't get the tubing detached very quickly and only could raise my arm as it continued to swell snd fill. 

It hurt SO badly!

The test was aborted and I was taken back to my bed in the ER and they did a chest X-ray. They had me massage out as much excess fluid as possible and then put ice on it. The xrays didn't show a clot (yay) and so we waited for a PICC line nurse to arrive to deal with my PICC line. 

About an hour later he showed up (he had been my night nurse a couple of nights when I had been admitted. Cool dude). He injected my PICC line with stuff called CathFlo and it got me going again. My PICC runs like a country river now (thanks, Daniel)! 

Finally, at about 9am I was discharged and went home. So, if you're keeping track, I was in the ER, basically, 12 HOURS. Initially I was thinking it wasn't going to be worth it, we can just push saline at home until it works, but it turned out to be worth the co-pay to know that a pulmonary embolism was a VERY real possibility for me that night. 

Today (Friday) the swelling has gone down significantly, but my arm is still quite tender and bigger than normal. Being a Human Water Balloon is NO fun, even if it's localized to one body part! You become ACUTELY aware of how much you use your arms for everything and when they're both rendered virtually useless, it stinks.

Be mindful of IV placement (I'm kind of screwed in this department since I have virtually no veins to use) and do your best to preserve the site once it's placed. Let your medical team know ANY time the IV doesn't feel right. You have the right to ask for it to be moved! 

My First Week Home with TPN

Living with a PICC line is everything you would imagine it to be...overwhelming. A lot of supplies are delivered to your house (A LOT), a machine is delivered, the TPN and the vitamins too, information about TPN delivery is explained, nurse visits are explained, phlebotomist visits are explained, how to hook up the TPN is shown to you, and then there's the PICC line itself. 

...it's mind boggling. 

Hooking up the TPN takes roughly ten minutes or so. You need to make sure that you have all of the supplies you need because the very first step is washing your hands with special soap. If you touch anything other than your TPN/PICC supplies, you have to wash again. One night, I had to wash THREE times! Many times I get hot and tired half way through the set up process and either have to sit down or have to ask my mom to take over.  

Sleeping with a two foot tube snaking out of your arm is not easy either. The TPN bag and pump reside in a backpack on the floor beside my bed. I then put the excess tubing on top of my comforter so that I am "free" to turn on to my right side. Even when I am asleep I am thinking about the tubing, trying not to yank it out. We don't want that to happen!

I'm hooked up to TPN for 12 hours straight, so if I hook up at 5:30pm I disconnect at 5:30am. I've put off hooking up until 6:30pm or later so that I can get a little (hopefully) get a little more sleep. 

TPN is NO joke. It's not something you mess with, hope for. But when it's necessary, it's necessary. Unfortunately, for me, it has become necessary and I hope that it helps me. I hope that it helps any person on it. 

Update--May 2016

April Showers did not bring May flowers for me...sadly. I've been in a rough patch lately, as many Chronically Ill people experience. Upon release from the hospital on March 11, 2016 I never really bounced back. The regimen of 3-4 Boost/Ensure a day was too much for me to handle and became less and less as the days passed until it became nearly nothing. And then hospitalization. 

Again. 

Nobody WANTS to be hospitalized, but sometimes you get a feeling that the hospital is the only place you should be. On April 22nd, that's what happened. My General Practioner decided the hospital was best and in I went. Two days in, the NG tube was placed. Two days after that, the PICC line. Clearly my situation was not improving. 

And this would be the strangest hospitalization I've ever had. 

From the time I got sick in 2010 I was given phenergan to help combat nausea and vomiting. It's always helped better than zofran and I've NEVER had trouble with it. This hospital visit, that would all change. Almost from the first time I was given it this hospital visit, I would begin to feel as though I needed to stretch but, no matter how much I stretched or which way I moved, the feeling never left. Then I would get itchy and fidgety. It was making me crazy! So they gave me Benadryl...the feeling left. The next night, it happened again, so they gave me Benadryl again...and Xanax. And the feeling left again. When my PICC line was placed, the dance continued...flush, phenergan, Benadryl, flush....I CANT BREATHE!! I grabbed my nurse so quick!! The rapid response team was called. An oxygen mask was placed. Ativan was pushed (apparently they thought I was having a panic attack or something. I wasn't. I promise you that.) I finally could breathe again. 

I am now listed as ALLERGY:: Phenergan 

To add to the oddity of the stay, though not terribly surprising, my blood pressure never broke 100. My baseline is 92/53. My blood pressure was 84/45, 73/35, and the like while in the hospital. Nobody had any answers for as to WHY my blood pressure was acting this way, so it still remains an unsolved mystery. 

Thankfully, after eleven days, I made it home, albeit with a PICC line and needing to use TPN, but home nonetheless. The veins on my left hand/arm are shot from either IV sticks or potassium and phenergan use, so the poor phlebotomists have their work cut out for them every time they draw blood--which is twice a week at this point. My arm looks like hamburger and feels like it's been run over, but with three heat packs and a few sticks, it MIGHT give a little blood. 

I'm hoping for the best in the coming months. My UCLA visit got moved to June 14th with the colleague of the original Doctor I was referred to see. So hopefully that goes well. I'll keep you posted. I don't know what I'm expecting when I go, but I'm going!