My name is Jenny and I am 32 years old from Fort Dodge, Iowa. In late 2017, I was diagnosed with a metastatic paraganglioma and underwent surgical resection in December of 2017 at the University of Iowa. Following my surgery, I was found to have the SDHB gene mutation. I sought support and hope through this website and from others’ stories prior to my diagnosis and during my recovery. I wanted to give back to those seeking answers who may feel the same worry, anguish, and solitude I felt prior to my diagnosis and during my recovery. With a condition like this being so rare, we have to lean on each other for support and amity. Below is a little about my story.
In February 2017, I gave birth to my third child. At the time, I had 3 kids, 4 and under. Needless to say, it was an exciting, but busy time. Shortly after I had my third child, it was like a light switched on. I began having headaches and increased anxiety. My blood pressure was elevated, but it was felt to be secondary to sleep deprivation, hormone changes, and postpartum changes. I was given a prescription for an antihypertensive which relieved some of my symptoms, and I was able to wean off of this. I returned to work full time and was exclusively nursing my baby. Over the summer, I continued to have headaches, which became a daily occurrence. My symptoms continued to worsen. I had difficulty concentrating, trouble sleeping, and severe muscle aches in my back and neck. At times, it literally felt like the adrenaline was surging – as if I was getting ready to jump out of an airplane or I was going to give a speech in front of 1,000 people. On any given day, it felt like my adrenaline was raging and it wasn’t a rare occurrence that my blood pressure would be dangerously elevated, even on multiple antihypertensives.
I was eventually seen by a local nephrologist who immediately suspected a pheochromocytoma. My urine catecholamines were four times the normal range. I underwent a CT of my abdomen which did not identify a tumor on my adrenal glands. In November, after continued suspicion and uncontrolled blood pressures, I had an MIBG scan which identified an extra-adrenal pheo or paraganglioma on my liver. I took a course of phenoxybenzamine prior to my surgery to prepare my body and in December, 2017 I underwent an almost eight-hour surgery followed by an eight-day hospitalization. During this surgery, lymph nodes from my abdomen were removed and were positive for metastatic paraganlioma. Pathology reports also identified the SDHB gene mutation. I jumped feet-first to the lifelong monitoring, worry, and constant hypervigilant state. Because my children have a 50% chance of inheriting the mutation, I met with a geneticist.
I am in the medical field and, oddly enough, I had been very intuitive about this diagnosis from the beginning. A few months prior to my diagnosis, I was lying in bed telling my husband about this particular kind of tumor. I had told him that this is what it feels like. For those that have experienced it, there is nothing in the world that feels like a pheochromocytoma/paraganglioma. I also told him I felt it was going to be cancerous prior to my surgery before we knew of the pathology reports – I just had that intuition. I return to University of Iowa on a regular basis for scans and urine testing. I am forever a pheo/para trooper and survivor. Since I have written this story, I recently gave birth to my 4
th
child in March 2019. My pregnancy was uneventful, and I am grateful for the little and big blessings in my life. I am especially blessed to be writing and sharing with others looking for answers.
