The first time I heard the words “ANCA Vasculitis” was after I woke up from my first surgery. I was extremely confused and frankly, was high from all of the drugs they had me on, but luckily at that point I wasn’t in pain. After the pneumonia, the doctors finally had a legit diagnoses.
On November 20th, they started Apheresis. I’ll just go ahead and write out the definition from google, because it’s still something that I’m trying to understand. “Apheresis is the removal of blood plasma from the body by the withdrawal of blood, its separation into plasma and cells, and the reintroduction of the cells, used especially to remove antibodies in treating autoimmune diseases.”
On the same day, my left lung which just had its lower lobe removed, decided to collapse. The doctor was able to get two blood clots and a mucous plug out of my lungs. After that, it was round two of Apheresis. On November 21st, I received my first dose of Rituxan, which is a medication used to treat autoimmune diseases and certain types of cancer. The next day was Thanksgiving, which is my favorite holiday. I don’t even remember if I was awake that day. My family had a store bought dinner at my house.
During that time, I didn’t get the full education on what ANCA Vasculitis exactly was. All of the sudden, I had this giant wound (I had no idea what that even looked like at the time because I was in no place mentally to see that) and on top of that, I was diagnosed with this strange disease.
From then on, I was in and out of the OR for wound debridements which involves the removal of necrotic tissue to promote wound healing. The debridement is necessary so the dead/necrotic tissue doesn’t hinder healing.
The first time I remember waking up and feeling uncomfortable was November 29th. I had just gotten out of surgery (another debridement procedure) and was starting to realize that what was going on was going to keep me in the hospital for a long time. I just remember panicking and asking my mom to stay the night with me. She slept on the little couch next to me in her jeans because she didn’t bring clothes to spend the night in. The fear and uncertainty was starting to kick in and the last thing I wanted was to be alone.
Dear Vasculitis 