Four weeks ago I entered the Brooklyn Hospital emergency room crying, afraid & not knowing I was dying. Thinking I was having a heart attack because of the racing heart beat and chest pain, I thought I was just stressed. I took an Uber there thinking, “Don’t lay down again. You won’t be able to get out of here.” When I entered the almost empty waiting room, I felt a small sigh of relief. Initially, they thought I might have a heart murmur but it turned out that I was experiencing a flare of a very rare condition called Wegener’s granulomatosis. This rare form of vasculitis was quickly attacking my organs and I was experiencing stage five kidney failure. My lungs were quickly filling with blood, drowning me.
Within days, I went from a fully functioning, walking, eating, singing being to being on life-support, unable to speak, walk, use the bathroom, or eat. I had to communicate through notepad and pen and text message and I had no idea if I would ever hear my own voice again. My hands were covered with ink from the consistent note writing and I didn’t know what was going to happen. I could feel myself slowly slipping away and in my dreams, I floated off unable to hold on. The smell of food disgusted me and the feeling of my loved ones hands upset me. Inside, I knew this might be it.
Brooklyn Hospital came together and worked as a team utilizing all of their resources to help me. Answering my questions, they took their time with me and treated me with respect and care when I couldn’t communicate & when I was frustrated & afraid they were there nonstop, supporting me and my family and my friends through the experience.
This experience has been rough & i’m still taking dialysis. I just stopped the plasmapharesis and rituxomab & thankfully I’m alive & here, speaking, eating, and walking. On 3/31, I turned 31. Three weeks ago, I did not know if I would be able to see or celebrate my 31st birthday on the 31st.
I plan to raise awareness about Wegeners and vasculitis. This autoimmune condition is becoming more common and it’s ability to destroy organs occurs quickly. I want to share what’s helped me thrive over the last 14 years. Part ½ 🌅💚
vaporwave
dededos
gummygunk
germansingergirl
izzy806
andulkaphoto
origamiaround
titsay
jbbartram-illu
tangentwithtanner
