When It Feels Like Christmas On Supply Delivery Day

Every Wednesday is Supply Delivery Day, it's like a Medical Supply Christmas that comes ones a week for those who live their lives permanently or temporarily attached to some kind of medical device. In my case, I have a PICC line (peripherally inserted central catheter) so that I can receive TPN (total parenteral nutrition) 12 hours a day due to Gastroparesis. 

At first, when all of those supplies showed up at my house along with all of the devices, it was daunting. I felt as though I was sitting in a sea of never ending syringes and alcohol swabs and saline flushes...and I didn't know how to use ANY of them! My mind and my heart felt overwhelmed by the boxes and bags of equipment splayed out around me. "When did my life become an episode of ER?" kept running through my mind. 

But as the tears began to form in my eyes and my heart raced, something deep inside me told me that I had to conquer this like I've conquered so much before it. And as the supplies were organized and my set up became part of my routine, it has all become less discouraging and more a part of my life. And when supplies begin to run low, I find myself looking forward to Supply Delivery Day!

And it's like Christmas or a birthday every week as you open up boxes and bags of supplies; mostly of things you were expecting (TPN, vitamins, alcohol wipes) and things you weren't because you forgot about them (flushes, needles, syringes, stockinettes, batteries, etc.) And, as you rifle through the newly arrived supplies, you realize just how much it feels like Christmas in the middle of June. 

Viewing these weekly deliveries as positive as opposed to added stressors to the Chronically Ill Life, it helps to manage this often intimidating, scary, and exhausting aspect of being ill. 

 

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! 

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!

My March Madness

Spending ten days in the hospital is rough...on anyone. You get ZERO sleep because taking your vitals at 12am is of great importance, for some reason. And drawing blood at the crack of dawn is of great importance too. Not to mention the beeping, the buzzing, the patients screaming, and the random medications that get administered at all hours of the day and night. I lucked out in that I got an isolation room, so it was pretty air tight and quiet...mostly. Still not much sleep though. 

I landed in there because my Gastroparesis--and apparently IBS--were out of control. I had been vomiting for 16 DAYS straight and I just could not keep anything...ANYTHING...down. Initially I was in there "for observation" but then it turned in to something so much more. 

The Internal Medicine doctor that saw me that first morning (I was admitted at 12:30 am on Wednesday March 2nd) admitted that he knew nothing of my condition and would defer to GI that would see me later in the day, but he thought I would be going home. I had not eaten the food brought to me that morning, didn't eat that afternoon, and by evening didn't eat either. When GI came, he thought I needed an NG tube and wanted to do tests for auto immune diseases. 

The next morning I turned away food and was visited again by the same Internal Med doctor who thought the NG tube would not help, but said "but your condition is above my scope of knowledge." My thought...then don't give me your opinion on it. A couple of hours later the NG tube was placed. It took three tries to get it in. The first try resulted in a big wad of it coming out of my mouth. The second try resulted in it just hitting the back of my nose. The third try was a success. 

It was slow going at first, but eventually it began sucking stuff from my stomach. It's an odd feeling, to be honest, but the relief you get from it is better. The nurse I had said that the amount of stuff coming out wasn't the problem, but the color. It was an off-putting hue--I'll leave it at that. 

Fast forward a day and a new GI came in and he looked at new x-rays that had been taken of my belly. Potassium pills were just sitting in my stomach like two BFFs. He said I was "FOS" and had a big gas pocket in my stomach. Based on that and my other issues (POTS, migraines, peripheral neuropathy, vertigo) he thought I was having a complete neurological breakdown and needed to have TPN and go to UCLA for better help. 

The next morning I woke up, my nose leaking puss. I buzzed my favorite nurse, Lesly and said "Uh, I think we have a problem!" 

She goes "Oh. My. Gosh!" Runs and pages the doctor over and over. I was having a severe allergic reaction to the bandage holding the NG tube in. By the time he finally came we had to take it off because it was peeling off from puss leakage. 

The doctor decided to put me on iv Benadryl and ointment on my nose due to the reaction. And NO MORE TAPE!! 

About an hour later the CNA comes to take my vitals and it hurt. I look down and my left elbow is swollen. Two days before they had started another IV in my right arm because my left arm was swelling; however, the vein was too small so they kept the left arm open for medications like phenergan and potassium. Seemed like the vein was going, so I called Lesly. Again she says "Oh. My. Gosh!" And takes out the IV. 

Finally they decided to put a PICC (Peripherally Inserted Central Cathiter) line in and give me TPN. When you're on TPN you can't have anything other than ice chips and sips of water, so I was on the yellow bag and ice diet for 4-5 days. 

Then along came the THIRD GI and she thought this whole episode was IBS gone wrong. I had to have GoLitely pushed down my NG tube to clean out my bowels. I will say this:: if you HAVE to have that devil drink, having it through the NG tube it the way to do it. But I spent the evening and night shivering, crying, and in pain. She also gave me some shot that was supposed to make my bowels move--it didn't--and then she decided to try and get me to eat, so it was Apple juice down the NG and then Boost--that was HORRIBLE. But I ultimately was able to get the NG out, food down, the PICC out and then home. 

The directions I got going home were to consume 3-4 Ensure or Boost because it would put me close to 1,000 calories a day. If I could get in some soup too, great. I've been struggling to get in much of anything more than 1-2 Boost or Ensure and a little soup. I've lost more weight (I went into the hospital weighing 165 and now weigh 159) and have trouble with nearly passing out. But I'm trying to stay positive. 

My referral to UCLA went through, but I won't be seen until November. We're hoping that they'll get me in sooner due to the complexity of my condition, but who knows. I'm sure that's how most people feel about their conditions. On the upside, my nose is normal again!

(The progression of my nose. Top left is bandage on [duh]. Top right is when I realized I was reacting to it. Middle left is right after getting the bandage off. Middle right is a couple of days later. Bottom left is 3 days before I went home. Bottom right is the day I went home.)