My 2024 Bodyssey

Friends and family have accompanied me on a medical journey that began in January. As the year unfolded, the Facebook Amyloidosis-Wild Type-ATTRwt-wtATTR group became a shelter in the storm, offering me a sense of community and understanding. In reflecting on my experiences, I felt like Odysseus charting his long and perilous journey back to Ithaca. When I sat down to write about this odyssey, the result was a dry, overwhelming chronicle—a narrative that even the most dedicated reader might abandon, much like Odysseus' crew succumbing to the enchantment of the lotus-eaters. Seeking to transform my story into something more engaging, I turned to ChatGPT for help, hoping to breathe life into the telling of my Bodyssey.

In 2024, my medical journey has been nothing short of an epic odyssey—a Bodyssey, if you will. Just as Odysseus navigated his way home through trials, delays, and near disasters, I’ve spent the year traveling through a labyrinth of medical diagnoses, procedures, and appointments in search of my own version of home: stability and a clear path forward. From the stormy seas of congestive heart failure and cardiac amyloidosis to the siren calls of misdiagnosis and seemingly endless waits, each step has been a test of endurance, patience, and resolve. Like Odysseus, I’ve relied on the guidance of skilled specialists and my own advocacy to navigate these uncharted waters. While I still have a few more stops to make before my "homecoming," I’ve come to understand that this journey is as much about resilience as it is about finding answers. Through it all, this group is my Ithaca—a place where I no longer feel alone in the midst of this battle.

In late January, I encountered my first storm—a bout of pneumonia that lingered for over a month. Though I thought I’d weathered it, I soon found myself struggling with shortness of breath, as if the winds were against me. At my next appointment, a startling gain of 10 pounds in just 10 days signaled the approach of another tempest. My doctor ordered tests and prescribed Lasix to bail me out of what we soon learned was edema and congestive heart failure. That night, as I struggled to breathe lying down, it felt as though I was facing my Scylla and Charybdis. Fortunately, the Lasix worked, providing temporary calm, and the tests revealed a BNP level of 3160—my journey had truly begun.

This led to my first major checkpoint: the cardiologist, who after running tests suspected cardiac amyloidosis. Like Odysseus consulting an oracle, I began a diagnostic quest that would weave through delays, tests, and referrals. Bloodwork hinted at myeloma, and the suspected amyloidosis required confirmation. A cardiac MRI was ordered, but with the slow pace of the medical process in rural New Hampshire, I felt stranded, waiting weeks for appointments while the waves of uncertainty grew higher.

By late spring, I was referred to the Solinsky Cancer Center for oncology. Faced with a choice between an earlier appointment with a less experienced doctor and waiting longer for a specialist, I chose the first, knowing I could always seek a second opinion. The oncologist confirmed smoldering myeloma but acknowledged amyloidosis was outside her expertise. Another stop, another delay. As I waited for a bone marrow biopsy and PET scan, I felt the clock ticking louder, the sands of time slipping through my fingers.

The results were inconclusive but suggested smoldering myeloma with amyloidosis. The approach was "watchful waiting," but I felt I needed a more skilled navigator for this journey. By July, I sought the wisdom of Dana-Farber Institute in Boston—a bustling port compared to the slower pace I had endured. Within days, I met Dr. Vianna, whose confidence and clarity lifted the fog. His explanatory chart gave me a picture of what I have been and where I will be going. It is on the left half of my Facebook home page. He quickly referred me to Dr. Falk, an expert in amyloidosis, marking a pivotal moment in my Bodyssey.

Dr. Falk unraveled the mysteries of my medical past, connecting decades of symptoms to a single cause: wild-type ATTR amyloidosis. Tests including a PYP scan, cardiac biopsy, and mass spectrometry analysis by the Mayo clinic. The tests confirmed his suspicions, and a Vyndamax a pill a day, I had my treatment. But my journey wasn’t over. Alongside amyloidosis, atrial fibrillation and a bladder lesion added new challenges. When a scheduled cardioversion in New Hampshire was delayed due to a residual clot, Dr. Falk, like a trusted ally, stepped in to resolve it, restoring not just my heart’s rhythm but my hope.

By November, I had reached a turning point. With diagnoses in hand and a clearer map of the road ahead, I could finally see my way home. I had to decide on my crew for the next part of the journey. Dr. Falk arranged for local follow-ups with my trusted cardiologist, while Dr. Vianna referring me to Dr. Elizabeth O’Donnell, the head of the Center for Early Detection and Interception of Blood Cancers for oncological care, ensuring I had the best guides for this ongoing expedition. Just as Odysseus relied on the gods and his crew, I leaned on my team of specialists, grateful for their expertise.

Dr. O’Donnell, much like the other exceptional navigators I encountered at Dana-Farber, proved to be supremely equipped to guide me further along my Bodyssey. She drew a clear and reassuring chart of my smoldering myeloma, explaining that my risk of progression to multiple myeloma was low. The chart now sits alongside Dr. Vianna’s map. To confirm this, she ordered a comprehensive set of blood tests. However, the results were unreadable due to damage to the red blood cells—either a reflection of an underlying condition or a rare misstep along the way. Though this latest delay felt like another storm rising on the horizon, I have confidence that, like all the challenges before, I will endure and push forward, steadily navigating toward home.

This Bodyssey has been long and arduous, but each trial has taught me the value of persistence and the power of finding the right companions for the journey. Though my destination is still ahead, I am no longer lost at sea, and I know I’ll reach Ithaca—healthy, resilient, and ready for whatever lies beyond.