"All my emotions are a mess—I’m mad, sad, happy—but I don’t know who I’m mad at: me, God, or life."
- Nellie Rodrigues
This is my first time doing this, so please bear with me. My name is Nellie and I'm 23 years old. I was diagnosed with lupus in 2008. I went to my rheumatologist complaining about shortness of breath, but he didn’t seem to think it was a big deal. I went to my hematologist to get a second opinion, and he referred me to a cardiologist, who after a sequence of tests, confirmed that I wasn’t making it up, and that the right side of my heart was enlarged. He told me I needed to see a pulmonologist. Within a month, it was confirmed that I have PH secondary to Lupus.
Later that year, my doctor admitted me in the hospital for further tests. That same night while going to the restroom, I had a complete heart block, and my heart stopped for six seconds. My room was full of doctors and nurses. The next day I was in ICU with a Hickman and temporary pacemaker. When I left the hospital, I left with a Flolan pouch and instructions on how to mix them. By December my line got infected and they had to switch it to the other side. A few weeks later that side got infected and they changed it to a PICC line and got me off Flolan.
In April I was scheduled for surgery. While in the operating room, I was kicked out by the anesthesiologist because he said I had less than 50% chance of surviving. They ran a test that same day and I was sent home. You could imagine how I felt.
"Before PH, I was the kind of girl who did everything by myself. Things have changed. I never thought I would say this, but I think I need help."
- Nellie Rodrigues
Throughout the rest of that year I was in and out of the hospital. Almost 11 years later, I’ve had more than 5 hearth catheterizations, and I am scheduled for another surgery at the end of this month. My greatest struggle is keeping my spirits up. I wake up every morning and attempt to put a smile on my face and pretend that I'm okay and that none of this matters. I can’t hold it in anymore. All my emotions are a mess—I’m mad, sad, happy—but I don’t know who I’m mad at: me, God, or life. The good thing is that my family is always here for me, even at my hardest moments. Just the other day I couldn’t get from my bed to my bedroom door, and that's when depression hits me hardest.
Before PH, I was the kind of girl who did everything by myself. Things have changed. I never thought I would say this, but I think I need help. My head, chest, and heart can't take this pain any longer. I think I'm losing hope and faith in God, and I know that should never happen. I've been through a lot I know some are worse-off than me, but to get all my diagnoses at my young age, all my dreams, illusions, everything, have vanished.