On November 1st, 2018 I went in for a chest x-ray which revealed an 8 cm mass in the left side of my lung. I went through the weekend without taking any prednisone and the symptoms became extreme. I was so sick that I started to hallucinate. I couldn’t sleep and my ankles and knees started to form a painful blister rash. My joints were on fire and the chest pain was getting worse by the hour. I was constantly coughing up mucus and blood.
On November 5th, 2018, I had an appointment with a Pulmonary Specialist. I talked to him about all of my symptoms and what I thought it might be. My symptoms seemed to match up with those of a rare fungal infection called “Valley Fever.” I thought it was a little far fetched, since it is prominent out West and the last time I was there was over the summer.
None of that mattered once the Infectious Disease doctors got involved. Part of me regrets bringing up Valley Fever in the first place because they took my blood, sent out the test, and started treating me for it before the results even came back.
Upon arriving to the hospital, I had no idea that I would be there for more than a night. The morning after I was admitted, I was scheduled for a bronchoscopy and it didn’t go as planned. I was coughing the whole time so they couldn’t get a biopsy of the mass in my lung. I had more x-rays and a CT scan, and chest tubes inserted into my lung to drain the pleural fluid. The nerve pain from the chest tubes is something I cannot describe. I just remember one specific incident where I simply lifted my arms to put my hair up and just ended up screaming in pain.
During this 10 day hospital stay, the blister rash that was on my feet and ankles started to show up on my hands and tongue.
On November 14th, the ID doctor decided it was time to pull the tubes. He explained that what was left inside my lung was pneumonia and it would resolve itself. The next day I was discharged. Of course I was excited for the tubes to come out, but something was telling me that I shouldn’t leave the hospital.
I remember crying to my nurse telling her that something wasn’t right. All she said was they wouldn’t send me home if they weren’t confident I would be okay. I was discharged on November 15th. Luckily, my parents flew in from Massachusetts to be with me while I was in the hospital and my mom is a Nurse/Clinical Educator.
When I got home, I felt weak. I just wanted to shower and lie down. Standing in the shower took all of my energy. That’s when I became really scared but I told myself I was just weak from being in a hospital bed for 10 days straight. After I struggled to shower, I tried eating but it just made me feel worse. I just remember laying on the couch until it was time to go to bed.
At about 1:30AM on November 16th, 2018, I woke up with a pain in my left side. I woke my parents up and told them something wasn’t right. The pain was getting worse by the minute so my mom called the hospital. I had no idea that the next 20 hours or so would change my life forever.
Dear Vasculitis 