“In December 2023, while at work, I suddenly developed a debilitating headache unlike anything I had ever experienced. Someone checked my blood pressure and it was 181/111, which sent me to the ER. That visit marked the beginning of a long and frightening year. Throughout 2024, I returned to the hospital 8–10 times with unexplained symptoms. During one episode, I experienced a severe panic attack that came out of nowhere. My limbs became immovable, I was drenched in sweat, blacking out, and numb all over. I was told it was anxiety related to my PTSD and that I simply needed more anti-anxiety medication.
My recurring symptoms included extreme fatigue, severe headaches, vision changes, resistant hypertension, sweating, tachycardia, panic attacks, heart palpitations, arrhythmias, chest pain, shortness of breath, and tremors. Despite seeing multiple specialists, not one physician tested my metanephrines and just chalked it up to anxiety...”
In December 2023, while at work, I suddenly developed a debilitating headache unlike anything I had ever experienced. Someone checked my blood pressure and it was 181/111, which sent me to the ER. That visit marked the beginning of a long and frightening year. Throughout 2024, I returned to the hospital 8–10 times with unexplained symptoms. During one episode, I experienced a severe panic attack that came out of nowhere. My limbs became immovable, I was drenched in sweat, blacking out, and numb all over. I was told it was anxiety related to my PTSD and that I simply needed more anti-anxiety medication.
My recurring symptoms included extreme fatigue, severe headaches, vision changes, resistant hypertension, sweating, tachycardia, panic attacks, heart palpitations, arrhythmias, chest pain, shortness of breath, and tremors. Despite seeing multiple specialists, not one physician tested my metanephrines and just chalked it up to anxiety.
In July 2024, I found out I was pregnant for the first time. I was extremely sick during my pregnancy and at 14 weeks ended up in the ER unable to keep down food, water, or even my blood pressure medications. My blood pressure remained uncontrolled despite multiple medication adjustments and yet no one seemed overly concerned – not even the high-risk pregnancy hypertension specialist. I later learned I had resistant hypertension and unfortunately, women are dismissed a lot during pregnancy too as they say “pregnancy can mask other issues”.
In October 2024, I received a call that my 48-year-old mother had unexpectedly died from a drug overdose. Five days later we buried her. The following Monday, I went in for my 20-week anatomy scan that is a moment most mothers remember with joy. Instead, I watched the screen as my baby didn’t move and I was told my baby had severe non-immune hydrops and was dying. After just losing my mom, I was now losing my child.
I was referred to Cincinnati Children’s Hospital in hopes they could help, but after extensive testing, there was no treatment available to save my baby. I was also at risk of developing mirror syndrome, a life-threatening condition. At 22 weeks pregnant, I made the devastating decision to terminate my pregnancy in Chicago.
While sitting in an Airbnb in Chicago, in pain from medication preparing me for surgery, I was still finishing assignments for my final semester of graduate school. I was completing my MBA and I did end up graduating! During the procedure, I was given standard anesthesia as all of us were unaware that I had an undiagnosed pheo tumor. During surgery, my blood pressure spiked into the 200s despite losing over a liter of blood. This a situation that should have caused low blood pressure, not dangerously high readings. No one connected the dots, but I knew something was wrong.
I later learned that 50% of pregnant women with an undiagnosed, untreated pheochromocytoma during pregnancy do not survive. I survived.
After returning home, I endured the worst headaches of my life for a few weeks. Doctors dismissed my symptoms. My pregnancy specialists didn’t need to see me anymore since I was no longer pregnant. I felt certain I was on the verge of a stroke or heart attack. I went to my longtime women’s health physician and begged for help. She doesn’t do pregnancies or general health, but she still helped me. She immediately referred me to a new PCP who ran the right blood tests. My normetanephrine level came back at 1,790 pg/mL which is nearly nine times the upper normal limit. A CT scan revealed a 3.5 cm pheochromocytoma on my right adrenal gland.
In March 2025, I underwent surgery in Tampa with a highly experienced surgeon. Using a posterior retroperitoneoscopic approach and specialized anesthesia, the tumor was safely removed through a full adrenalectomy. My blood pressure normalized immediately after surgery and the pathology confirmed the entire tumor had been successfully removed.
Nearly a year later, my blood pressure remains normal and I feel like I have my life back. Genetic testing revealed I carry a TMEM127 mutation and I now have annual labs with my endocrinologist. My most recent normetanephrine level was 35.7 pg/mL which is normal!
This journey tested me in unimaginable ways — physically, emotionally, and mentally. I lost my mother. I lost my baby. I nearly lost my life. But I stayed strong.
The most important lesson I learned is to always advocate for yourself and do your research. It is uncomfortable. It is exhausting. It can feel defeating. But if I had stopped asking questions, stopped pushing for answers, or ignored what my body was telling me, my outcome could have been very different.
Keep fighting.