On November 30th, 2018 my breathing tube and NG tube were taken out! I actually remember telling the nurse who took one of them out that I loved her. I think I met her that day but I was so happy to be able to talk again since I had them in for weeks. The NG Tube; otherwise known as Nasogastric Intubation is the insertion of a plastic tube through the nose, past the throat, and down into the stomach. This was necessary for me since I wasn’t able to eat due to the breathing tube in my trachea. After that, the breathing tube would be removed almost every time I was still under anesthesia after surgeries, before I ended up getting a tracheostomy.
The next day, December 1st, we found out there was a bed open at UNC Hospital in Chapel Hill. For the last week or so, we had been talking to the doctors about transferring to a hospital that would be more equipped to deal with what was happening to me. That doesn’t mean Presbyterian isn’t a good hospital. I continued to get Rituxan treatments there in 2019 and the staff was amazing in every department I stayed in. With that being said, my situation was complicated. I needed Plastic Surgeons, Wound Care, Rheumatologists, and eventually respiratory care. It came down to UNC or Duke having a bed open up since both hospitals were completely full.
At that point, I was excited to leave. Each weekend that I remember at Presbyterian, my favorite nurses who knew me the best seemed to have off. People have lives; they weren’t living in the hospital like me, but I became so attached to the people who were taking care of me that it was really emotional for me when they weren’t there.
The Doctors wanted to fly me in a helicopter to get to UNC. It was raining and I had never even been in one before, and I didn’t want my first experience to be as nerve racking as that would’ve been. The drive is only two and a half hours from Charlotte, so once I was reassured that my lifeline was longer than two and a half hours, we were 100% driving.
I got in the ambulance and I think they must have given me something to sleep, because I was out. I remember it being kind of dark outside when I arrived. It must have been early evening because I left the hospital around 2:45pm. A bed opened up in the MICU (the Medical Intensive Care Unit). It was the smallest room I had been in so far, but all I remember is my nurse being an actual angel. I hadn’t been 100% cleared to eat solid foods yet, so it was basically limited to apple sauce up until that point. My nurse told me I could order mac and cheese from the cafeteria and I almost burst into tears because I was so happy.
A little while after we got “settled” my nurse noticed that one of my pupils was dilated. I answered a lot of questions; if I had a headache or if anything felt different. Everything felt different of course, but I didn’t have a headache. When people are hovered over you shining lights in your eyes after you just went through a traumatic experience that you don’t even fully understand; something like this can be a trigger. I got extremely emotional because my parents had already left to stay in the hotel or Airbnb when the doctors decided it would be best to do a CT scan to check out my brain.
I just remember being strapped to a board at what seemed like the middle of the night and being in so much pain because of my wound and the nerve pain which still wasn’t under control. I vividly remember being rolled down to Radiology for the scan. I was unfamiliar with the hospital, and it was a long ride down to the department which was a few floors below where I was staying. It all just felt so foreign, like I was some kind of an experiment and had no say in any of the tests or scans they were running on me (FYI–you ALWAYS have a say but at that point in time, I needed the CT scan whether I was comfortable or not). Luckily, they didn’t find anything and my pupil ended up going back to normal after a couple of days.
This was just the beginning, as I spent almost 5 months at UNC and met some people that I truly believe will be in my life forever. At this point in time, I really had no clue what was going to happen to me. I was 26 and thought my life was ending.
Dear Vasculitis 