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Patient story

Nellie Rodrigues

"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.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.