Listening for Hoofbeats

I was 22 years old when a doctor told me I had 5 years to live. I was driving home during winter break, my phone in the cupholder on speakerphone, as the doctor told me the suspected diagnosis of fibrosing mediastinitis (FM). If he had been correct, I would have been dead within 5 years. I would suffocate to death on scar tissue invading my lungs. I sat in the car and cried.

At this point, I had been having chest pains for a little over a year. One day, I woke up with such severe pain that I couldn’t breathe. I went to the emergency department, where they rushed me to CT because they feared a pulmonary embolism. A few tests later, a doctor stepped into a dimly lit room to tell me they suspected malignancy.

At the time, I was attending Purdue University. At 21, I was still covered by my parents’ health insurance, which was based back home in New England. Little did I know that this insurance covered only services rendered in New England, so when I was at school in Indiana, I was essentially uninsured.

My options were to drop out of college and move back home or remain in Indiana and try to fight. I stayed and fought. The only plan I had was to survive.

As the months dragged on, I struggled. I could barely move without pain, could barely breathe without aching, and at one point, I began coughing up blood. Every joint in my body screamed, but nothing was as bad as the imaginary steel rod piercing my chest with white-hot pain. Every breath, every motion jostled this steel pole and sent me reeling.

It all amounted to a crushing feeling of despair that I couldn’t control anything. As each day ticked on, my life seemed to be ticking closer to a permanent stop. I feared nothing could save me.

When I went home to New England for 3 months, I was able to seek care. I sat through imaging, blood draws, and long appointments. By the end of summer, I was diagnosed not with lymphoma but with histoplasmosis. Histoplasmosis is a fungal infection commonly presenting as asymptomatic. I was one of the lucky ones who not only had symptoms, but had symptoms that did not resolve on their own.

I arrived back at Purdue for my fourth fall, taking an oral antifungal regimen and waiting. After my sixth CT scan, my results indicated that nothing had changed. My infectious disease specialist didn’t have next steps; as far as she was concerned, I was no longer an infectious patient. She wished me luck and dismissed me from her service. I sent the radiological findings to every doctor who had seen me. I begged someone to respond and give me an answer.

A week before Christmas, I got what I asked for: a diagnosis. In rare cases of histoplasmosis, patients develop FM. The body fights the infection by encapsulating spores to prevent spread, and in those with FM, their bodies don’t stop creating encapsulation. Lungs keep growing scar tissue until the patients suffocate within 5 years.

As of today, there is no known cure. I refused to accept this. I refused to accept that I had been fighting, that I had already been denied by Death, just to be sentenced again. Even at my lowest, I got back up and kept fighting.

I made an appointment at Cleveland Clinic, the largest center for FM in the US. I awoke before dawn and drove 5 hours just to hear that I did not have FM but costochondritis, an inflammation of cartilage that connects the ribs to the sternum. It usually goes away on its own and can be easily managed with medications like acetaminophen or ibuprofen.

Before my appointment, I was taking 3200 mg of ibuprofen and 3000 mg of acetaminophen every day for 2 months, which barely took off the edge. Months went by, and my pain did not disappear. As costochondritis is a temporary condition, I knew it wasn’t the end. It was closer than before, but not right.

Later, a doctor introduced me to hypermobile Ehlers-Danlos syndrome (hEDS), and all the dots started to connect. hEDS is a chronic disease state characterized primarily by a dysfunction in connective tissue. Patients with hEDS often experience dislocations, poor wound healing, and manifestations throughout their bodies. This diagnosis fit everything, even the issues I didn’t think to notice.

Slowly, I found solace and began to lean on those around me. I connected with fellow patients. I met health care professionals who supported my condition. I learned that patients with EDS are called “zebras.” A common phrase in the medical world is, “When you hear hoofbeats, think horses, not zebras.”

I was 22 years old when I thought I had 5 years to live. I was 23 when I had to learn to be a zebra. Sometimes, it takes only 1 voice to validate a lifetime of hurt, and 1 hand to lift us from the depths of our own despair.

I am grateful for my life, for my support system, and for my medical team. I am grateful that I have found answers, even though the path to the truth was long and winding. My heart breaks because I know that I am not alone. I know that others like me are struggling to find their own truths in a lonely, broken system. There are so many souls lost on this journey. If I hadn’t found someone to believe me, my path would have also stopped.

As patients, we need to constantly fight to be heard. As health care professionals, we are uniquely positioned to listen. We help life go on.