On December 7th 2018, I woke up and was waiting to go to the OR for my 10th surgery. Ten surgeries in less than a month still sounds crazy to me, even though presently I’ve gone through 38 of them. I think this was the first day I met the surgeon who would eventually do my 14 hour flap surgery in February. After doing the wound vac change and debridement, he told the team he would most likely try to use the artery under my left armpit for the big surgery down the road.
On December 11th, a doctor came into my room to talk to me about getting a tracheostomy and PEG tube. For those of you who don’t know (I didn’t), a tracheostomy is a procedure which consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision in the trachea, otherwise known as the windpipe–thanks google. Since I would be going to the OR so much, this was necessary to protect my windpipe and vocal chords. Percutaneous endoscopic gastrostomy (PEG) is an endoscopic procedure in which a tube is passed into a patient’s stomach through the abdominal wall, to provide a means of feeding when oral intake is not adequate–again, thank you google. Basically, a PEG tube is a feeding tube that goes into your stomach.
More tubes and more scars. I didn’t know how much more I could take, but I couldn’t argue with their logic. I couldn’t stand the thought of more tubes being ripped out of my throat every time I came out of surgery; and I couldn’t eat because I was so nauseous.
December 12th was the big day. It was surgery #12 and the day they were performing the tracheostomy and PEG tube insertion. After surgery, I told the nurse I only wanted to see my mom. I felt like a monster and didn’t want anyone else to see me. I was supposed to go to a new unit in the hospital that night and they had already given my room away, so I was in the recovery room with my mom for a while.
When a room was ready for me in the MPCU (the Medical Progressive Care Unit), where I would spend the next two months, I cried. My nurse who had been taking care of me for most of the last week walked down with us and it was so hard for me to say goodbye to her. I hated going to new units because I was scared the nurses wouldn’t be nice. I wish I knew that I had absolutely no reason to be scared; because I met the most amazing people in that unit and I truly believe I made some life long friends.
Dear Vasculitis 