Advocating for Myself

Yesterday I went to the hospital three times. I had a tender spot in my neck, right where the nurse who placed the PICC line over two months ago had to direct the line downwards to my heart instead of upwards toward my neck. Before I went into the hospital for my routine dressing change, I called and let the nurses know what was going on so they could get an order for a chest X-ray to check the PICC placement. The X-ray showed a large loop in the line, right where that tender spot was (whew, I'm not crazy)! The only thing I can think of is that the line got pulled out a few inches a couple weeks ago by a nurse as she was changing my dressing. She pushed it back in...but why hadn't it hurt until Wednesday night? No idea. 

The nurses pushed one of their chairs at me and had me sit behind their desk with them while they looked at the X-ray and scheduled a new line placement. I sipped from a company cup like I used to before I quit working just over a year ago. It was nice to be one of them for JUST a minute. 

I could have gone to interventional radiology (IR) right away, but I promised my graduating kindergartener we would pick her up and take pictures with her teacher since it was the last day of school. That was fun and sweet. My daughter's teacher is the most wonderful, genuine person, and got my child reading like a pro this year. 

When we got home, my angelic mother-in-law was working in our house, cleaning dishes, bathrooms, and the floors. The soup she lovingly made was stewing in the crock pot all afternoon. I was so grateful for her help. 

I looked forward to IR for the weirdest reason: I was excited to lie down and rest my head and neck (....aaaand fix the loop in my PICC line). They unwrapped my dressing in the hallway (what the?) and guided me into the imaging room. After prepping and draping me, the doctor inserted a guidewire, took out the old line, and put a new line in the same site with X-ray visualization. Hopefully they ruled out structural problems after I requested it, but I was kind of just another body to them and wasn't really respected enough to get answers, even as they worked. 

The guidewire was inserted too far into my heart and made me want to cough. I struggled with breathing for a minute while they worked, but they didn't validate my discomfort. My heart felt and looked like it was being tickled on X-ray; I have no doubt I was in an arrhythmia, but I wasn't being monitored in any way. Once the PICC was placed in the superior vena cava (SVC), I felt better. When he was done, the doctor asked why I have a central line and how I got Lyme disease. 

The procedure didn't take long. I got to watch myself breathe while the X-ray machine was running in real time. It was the most beautiful thing; I'd never seen my insides in real time before. What a wonderful Galaxy I am! Bodies are the best Invention ever. 

The techs who took care of me in interventional radiology were very nice, but they didn't know much about PICC line dressings. I asked three times (twice in advance) for the gauze method I've needed the last couple weeks with the blistery rash around the PICC site, and they fully retorted, then ignored me. Furthermore, the tech who dressed the site put a dressing on while my arm was still wet with iodine, even though I told her not to. Sigh. I was still under a sterile drape and going by feel only. I walked out and noticed the dressing was put on completely wrong and went from my armpit to my elbow. Too exhausted to fight it, I just went home to put on pajamas and rest. 

But an hour later, I knew I couldn't make it through to my next dressing change with wet iodine eating at my open skin. It was burning I called my girls at the IV therapy unit again. They said they could fit me in for a dressing change right away. I went to the hospital for the third time. Luckily, my husband had gotten to work from home a lot of the day. 

The nurses wanted me to spill all the details about the loop (still elusive) for education purposes, so I did. I was already getting red and reactive at my elbow and raised blisters from where the wet iodine was (and blood, just a little). I felt high maintenance, but the nurse said it was a good thing I came in and I knew it too. It was just way more hospital than I wanted for the week. 

The nurse removed the dressing, wiped off the blood and iodine with alcohol, squirted the site down with saline, let it all dry completely, and dressed my arm, all with sterile technique. 

You've gotta love good nurses! They are going to talk to the educator about my loop. The nurses had never seen a loop that huge before and wondered if it could have been an aneurism or if it had been there since placement. They don't do routine chest X-rays for PICC placements anymore like we did when I was working; they use another method which shows if the tip is placed in the superior vena cava, but not whether the line is looped or a straight shot. 

(I think part of my mission in this life is to be a medical guinea pig to help educate others by being an aware patient and sometimes calling people's bluff. I've had lots of teaching experiences as a patient.)

That was yesterday's urgent, medical endeavor. The loop was causing inflammation in my vessel and was a blood clot risk, plus it had been painful to sleep with and was giving me a headache with nausea. I wonder if it was obstructing blood flow to my brain; I imagined that instead of a nice round jugular, it had been stretched flat by the loop. 

It was a a busy evening after all that: I saw my zoning friend to help work out some of the radiation I'd had, took and ate loads of antioxidants, had dinner and my home IV, read scriptures with my family, rested...it was a long day. My guts acted weird so I couldn't fall asleep until two, but I think they dealt really well with the day they had. My body is team, and some players had really hard plays yesterday, so I was gentle on the whole team and just let them talk it out once I could sit back and listen. My guts were definitely the loudest!

My daughter has been a little busybody today without school to fill her morning. She picked an outfit for me to wear and has been trying to get me up to get ready for the day. She doesn't know that it's not usually up and moving very much before lunchtime after a day like yesterday. I hope I can keep my children happy and having fun this summer! I used to love hot weather, but for the past seven summers it has really drained me. I'm more likely to feel like passing out in heat than any other weather. And it's no fun to swart when you have open skin on your tender inner arm. 

Today I am unapologetically recovering. I really left it all on the field yesterday and am now thanking my body for running faster than it was able. In three weeks I should be done with IVs for a month while we take a break and reassess how the regimen is working. That will be six total months of central line IVs, and about a year of IV treatments total. Wow!

A long time ago as I prepared for a statewide scholarship competition, my coach told me that no one is going to stick up for me but me. In nursing, my most important job was to advocate for the patients. I have taken both of those charges to heart, and wrapped them into one yesterday as I advocated for myself. It was an educational day. I'm glad everything worked out and look forward to spending more time with my babies this summer.