At 10 a.m. on August 19th 2021, I had been scheduled to do a Barium Swallow to see if we could find an answer to my swallowing difficulties and pain. My medical team wanted to take advantage of the fact that I was an inpatient therefore, it was easier to schedule more of these exams with me being inside the hospital.

Since my heart rate was so dangerously high all of the time, they had one of my nurses stay with me during my tests to monitor my heart. We had a little portable heart monitor that we took with us, and it was nice having the nurse there since they were really kind and made it so I wasn’t alone.

I was transported to the barium x-ray lab and my nurse was given a suit to put on to protect them from radiation. I was carried and put onto a slab table that could tilt in order to measure my swallowing at different heights.

They had almost given me the wrong solution because they thought I was a different patient but luckily realized before I swallowed anything.

They told me they were giving me the thicker of the two liquid options and that it would taste bad. I had to sip through a straw and then swallow when they positioned the x-ray over my face and chest.

For some of the scans they had the table tilted to where I was having to put weight on my legs and my heart monitor would always go off from the energy it took to do so.

The last scan they had me upside down swallowing the liquid to see if it would work.

I managed to swallow everything without any difficulty or pain and knew if they gave me something solid it would get stuck.

The doctor then gave me a large pill that they wanted me to swallow. It was larger than a quarter (I would say closest size would be to a glucose tablet) and I asked if I could break it in half and swallow both. They said no, it had to be the whole pill. I tried numerous times knowing that this pill would most definitely get stuck, but unfortunately since I couldn’t swallow it, the doctors didn’t want me to push it.

I was done with the test and was really proud of myself for getting through it since I have a lot of difficulty drinking things.

I got back to my room and visiting hours had started so my dad was there with me.

My nurses had started some potassium in my IV line since my PICC Line procedure had gotten pushed back (we were called while I was in the barium swallow and told that I needed to be in surgery but when we asked if I could go after my barium swallow they said no and scheduled me later in the day).

After about 5 minutes on the potassium, I started screaming and crying in pain. It felt like I was putting ground pepper into my blood stream. My veins were burning. My dad pressed the call button, and we got the nurses in the room. We then discovered that for some patients, putting potassium in through an IV can cause a lot of pain so they were going to put it in a different way.

They reconnected some tubes and left the room.

After 30 seconds I started screaming again.

We realized we hadn’t flushed the line of the potassium that was already in the tube (so even though the tube was switched, there was the remaining potassium still being pushed into the bloodstream).

We called back the nurses to fix that-again.

So later that day, procedure time.

I want to preface that I reallllly wasn’t prepared at all for this and didn’t even know that I wasn’t getting it fixed by my bedside like the first procedure.

I was transported to interventional radiology (I.R.) which is like a fancy operating room that has an x-ray so they could see the whole time where the tubing was going as they inserted it.

My nurse tried to get permission to stay with me, but they weren’t allowed.

I was put in a prep space and met with some doctors to sign some forms. It was at this moment that I realized I was going into surgery.

They were reading to me the forms and skimmed over the potential risks and things that were unlikely to happen.

They mentioned that for the procedure they would just uncoil the line and I’d be out. They said the procedure would take a maximum of 15 minutes.

They said in an extreme scenario they would pull out the line and restart, but it was highly unlikely, and I had nothing to worry about.

My procedure lasted 3 hours.

So, ya, I think we can all guess that things didn’t go according to plan…

I was rolled into the operating room (O.R.) and it was exactly like in the movies- 80s music playing and super sterile white room that was very cold.

They carried me onto this cold table, and I spoke with some very kind nurses and doctors whose job was to prep the area for the procedure. They introduced themselves to me and we chatted about life.

As I was getting prepped on the table, I then realized I was going to be awake for the procedure. I figured it’d be fine since they were just basically pulling the line out a bit to straighten the coil…

About an hour in, the O.R. nurse came and sat by my head. They explained that the surgeon would be late, so we were making conversation to pass the time.

The surgeon briefly popped in once to mention they were almost done with the other patient but was waiting for them to be done “draining”.

After 2 ½ hours on the table, the surgeon came in and was ready for the procedure.

They came in and announced that they were having a shitty day and made some reference to Curious George. I was trying to make light of the situation and laughed along the jokes they were saying to their colleagues. They did not introduce themselves or ask me for my name at all. Anytime I tried to add into the conversation they ignored me.

As they were getting more things prepped, I had a monitor to the right of my head that was displaying the x-ray of my chest and a heart monitor where I could watch my heart rate as it continued to climb.

My head was turned to the right, as it was for the first procedure and the surgeon announced they wanted to replace the whole line.

I could tell this wasn’t planned because the prep doctor had to go get new tubing and everyone was asking “are you sure?”. I began to get nervous since I wasn’t planning to be awake again.

The surgeon injected the lidocaine in a few different areas of my arm and began the procedure. After they took out my first PICC Line, they began announcing what they were doing since it was clear they were teaching someone next to them.

I wasn’t a fan of the surgeon’s “humor” or at the fact that they were announcing what they were doing.

They grabbed the scalpel and said, “we’ll find out if the lidocaine works or not if this hurts really bad,” and I was there holding my breath waiting for the pain of being cut into-which LUCKILY the lidocaine worked, and I didn’t feel anything.

I would say it definitely was like something from a horror movie.

As the surgeon was pushing the tubing into my vein, I felt an internal “pop” by my collarbone. The mixture of that and the sensation of someone treating your arm like a toothpaste tube, I had another vasovagal syncope attack.

I calmly announced to the room, “I am just letting you know, I’m about to move (since I had to be still), and I’m going to throw up.”

The surgeon responded by saying, “it wasn’t even the part that I should be feeling like I needed to throw up.”

I ignored the comment as I began dry heaving. The nurse ran over and kept telling me to calm down.

At this point I ignored everyone and just internally tried to distract my mind and not think about how everything was happening internally.

Thankfully, the procedure was almost over, and I had the tubing stitched to my arm.

As I was brought back to my room, I had more dry heaving flares just from the whole experience of the day and explained everything to my dad.

In the evening, a team of dressing nurses came to change the dressing and cut off the stitches. They mentioned that the stitches increase infection risk and they had other tools to keep the line in place aside from stitching.

That night I was FINALLY put on some generic total parenteral nutrition (TPN) since I finally had a line that worked. I still had IV fluids running since I was too dehydrated to remove them.

I was only supposed to stay at the hospital for 3 days to get the PICC, have them customize my TPN based on my body’s needs, and make sure I don’t have re-feeding syndrome.

Since they didn’t have inpatient beds, the PICC was placed incorrectly, and I had more issues over the coming days, my stay ended up being longer than what everyone expected.