Before Diagnosis
For nearly 20 years, I struggled with a series of mysterious symptoms that seemed impossible to diagnose. As an avid runner and a former elite competitor in major races, including the Boston Marathon, I was used to pushing my body to its limits. Running had always been my source of strength and resilience. But something wasn’t right—my health seemed to be working against me.
Persistent headaches, uncontrollable high blood pressure, heart palpitations, swelling, and excessive sweating made it increasingly difficult to get through my days, let alone train and compete. Over the years, I saw several different doctors who attributed my symptoms to stress, dehydration, side effects from over-the-counter headache medications, allergies, and even simply the demands of being an athlete. Each visit to a healthcare professional seemed to end without an answer, leaving me feeling increasingly alone and unheard.
I always kept a journal, and over time, I began logging my symptoms, hoping to find some pattern that could provide answers. But year after year, my journals were filled with confusion and frustration, as well as a steady decline in my athletic performance. It was incredibly disheartening to know that something was wrong with my body yet have no answers. Still, I refused to give up. I knew deep down that my symptoms were somehow connected to my uncontrollable high blood pressure. I continued to advocate for myself, unwilling to accept that I would have to live this way forever.
Diagnosis
It wasn’t until 2023 that I finally received the diagnosis that changed everything: primary aldosteronism. The process of getting there was anything but easy—it required persistence and the courage to keep questioning. Ultimately, it was a trip to the ER for an unrelated issue that led to an abdominal CT scan, which revealed a small tumor on my left adrenal gland. Ironically, I had undergone a similar scan years earlier, but the tumor was likely too small at that time to detect. I felt incredibly fortunate to be referred to Mass General, where they knew exactly which tests to run to confirm the diagnosis. Although the process was complex and took a few months, by September 2023, I finally had the confirmation I needed.
The diagnostic process involved multiple tests over five months to determine that I had primary hyperaldosteronism and was a candidate for surgery. I vividly remember the moment when I finally received the results—it was a mix of relief and disbelief. Relief that I finally had a name for what was wrong, and disbelief that, after so many years, I had been right: something was fundamentally wrong, and now there was proof.
Treatment
In October 2023, I underwent surgery to remove my left adrenal gland, which had been overproducing aldosterone and causing my symptoms. This procedure, known as a left adrenalectomy, was truly life-changing. Almost immediately after the surgery, my blood pressure normalized, and the debilitating symptoms that had plagued me for years began to fade away. I was so relieved to finally have an answer, and for the first time in years, I had hope that my life could return to normal.
Recovery took time, but the improvements were significant and noticeable right away—my blood pressure stabilized, the swelling subsided, and the daily headaches finally stopped. It felt like a weight had been lifted off my shoulders, and I regained a sense of control over my health and future.
Since Treatment
It has now been almost a year since my surgery, and the difference has been profound. I have been able to return to running—not at the elite level I once competed at, but as someone who simply loves the sport. My quality of life has dramatically improved, and I no longer need to rely on medication to control my blood pressure. I have regained a sense of normalcy, and with it, a renewed appreciation for what my body is capable of.
Since then, I’ve also learned that millions of people worldwide may have primary hyperaldosteronism, yet it remains widely underdiagnosed, even with the significant symptoms that come with it.
Thankfully, the surgery marked the end of my long and challenging journey. I’m excited to share that the past year has been the healthiest I’ve felt in almost 20 years.
After my diagnosis and surgery, I decided to write a book, Misdiagnosed for Miles, to share my story with others who might be facing similar challenges. My hope is that this book will not only offer a sense of hope and understanding but also raise awareness about primary aldosteronism—helping others avoid years of confusion, frustration, and misdiagnosis. The book will be available on Amazon on October 19, 2024—a date chosen to coincide with the one-year anniversary of my surgery.
To anyone reading my story: I want you to know that advocating for your health is always worth it. Do not give up, even if it feels like no one is listening. There is power in persistence, and I hope my journey can help others find the courage to continue seeking the answers they need.
If you would like to learn more about my journey, my book, Misdiagnosed for Miles, will be available on Amazon on October 19, 2024: https://a.co/d/4fTRVQv
