My Journey of Dismissal, Delay and Diagnosis

My Aspergillosis Story: A Journey of Disbelief and Diagnosis

2014 (age 38)

My husband and I lay in bed, staring up at the ceiling. “It’s probably just extra damp outside right now,” my husband mused. “Maybe,” I agreed half-heartedly, ever the worrier. A splay of black clung to the ceiling above us, looking like spray paint more commonly seen on freeway walls.

We had just rented a little bungalow home near the San Francisco airport, so my husband could shorten his train commute into the city itself. Our four-year-old son slept quietly in the bedroom next to ours.

With distilled vinegar and water, we cleaned the lining of mold from the ceiling. We notified our landlord, who plead ignorance, and suggested we wipe down the inside of our windows if there was any moisture.

The following week, and all the weeks thereafter, the mold reappeared. I developed a chronic dry cough. I was assured by my doctor, however, that exposure to mold could not lead to any enduring health issues in healthy individuals. It was, after all, everywhere. When I explained that I had multiple chronic health problems, that though nebulous, were very real and had impacted my life for a while (asthma, frequent infections, chronic migraine, hypothyroidism), my doctor told me again, firmly, that I was considered healthy.

Nevertheless, we moved a year later, growing weary of and worried about the recurring carpet of black in the bedroom above — and the related cleaning required.

Was this the beginning? Did this exposure lead to my lung issues that followed? Nobody has answered those questions definitively.

2020

On September 9th, the sun never came up. We watched from our home in the hills in the San Francisco Bay Area as the sky turned from black to dark brown — and stayed that way. My son hunched over his computer at the dining room table, connecting to his fifth-grade class remotely due to the

pandemic. Our indoor track lighting provided the only illumination for the room. The next day, fortunately, contained some sunlight.

However, for weeks, soon to be months, the sky was choked with heavy smoke from uncontrollable wildfires nearby. We all coughed our way through it.

2021

Though my family’s coughs receded when the smoke did, mine did not. I found myself gasping at times. I was told I probably had postnasal drip from allergies that was causing a cough. Normal, they said. Months passed and my experience felt anything but. I pressed for a referral to a pulmonologist, and finally got one. After a series of pulmonary tests, I was told nothing was wrong. I struggled with what to do next. I had a fierce antipathy towards what could be construed as drama, and was intensely self-conscious about being a squeaky wheel in a medical context. But I was still coughing.

I decided to push my pulmonologist to get a CT scan, which, when completed, showed a 1.8cm nodule in my chest. Single nodules are common, I was told, but if I wanted, we could do a biopsy to rule out cancer.

I was wheeled into the room for the needle biopsy with a surgical mask attached to my face — the pandemic was still raging. “So how many times have you done this,” I couldn’t help asking the interventional radiologist, who looked not much older than my then eleven-year-old son. “Hundreds,” he assured me.

My procedure would be outpatient, a relatively simple and painless one, I was told. I had been warned of the risk of pneumothorax, or collapsed lung, but it was a small one. Lying in the recovery room after the procedure, I felt a sharp pain in my chest. The medical staff rushed to x-ray me, but then immediately relaxed. No pneumothorax, they said. The pain endured and I began to cry. Still, I was cleared for release home. I made one last plea to the nurse as I was leaving. “It really hurts,” I said. She rolled her eyes. “Your x-ray was normal,” she told me. “Maybe get a massage.”

For two days I lay on my bed at home, my breathing short and fast, pain radiating from my chest. I finally asked my husband to take me to the emergency room. The x-ray performed there revealed a collapsed lung. A nurse placed a nasal cannula for oxygen therapy and firmly affixed my blue surgical mask back over it.

The results of the biopsy revealed the mass to be an infarction, or dead tissue, likely caused by a pulmonary embolism that had been missed. Additional tests showed no current clots. The cause was unknown.

Unsettled by the dearth of answers, I transferred my care to a pulmonologist at the University of San Francisco (UCSF). Kind and skilled, my new pulmonologist also exhibited a strong medical curiosity. He helped me choose a regimen of inhalers that helped my breathing and cough. We treated occasional bouts of bacterial bronchitis with antibiotics, which also helped. However, he found no additional answers.

We followed the nodule with a couple subsequent CT scans, but he told me that whatever had caused the infarction and presumed pulmonary embolism was no longer active. No need for continued monitoring.

2023

Meanwhile, my cough endured. I experienced shortness of breath on exertion, and started having both pain in my ribs and an itchy feeling inside my chest. A CT scan revealed a new nodule. No need to worry, I was told; let’s just wait and monitor. Additional scans over the next six months showed multiple new waxing and waning nodules, some with central cavitation and ground glass opacities, “consistent with fungal infection,” the radiology reports read. However, blood tests were negative for fungal infection.

My pulmonologist ordered a bronchoscopy with lavage. After two months of infuriating, alternating calls to the clinic and to my insurance company, the procedure was finally sanctioned and scheduled. Lavage results revealed scedosporium, fusarium, and aspergillus.

I started Voriconazole, the only medication able to target all three of the fungal elements identified in the lavage.

I spent September in the recliner in my bedroom, lights dimmed, trying to see my computer through the haze of visual hallucinations induced by the Voriconazole. My pulmonologist requested a referral to an infectious disease doctor, as I was both not reaching therapeutic levels of the medication, and experiencing significant side effects.

Five weeks later, at his first available appointment, the ID doctor told me, essentially, that I couldn’t have fungal lung infections because I was healthy, with a functional immune system. The lavage results were likely just the result of contamination or colonization, not infection. He took me off the Voriconazole, and because a subsequent scan revealed no new nodules, he told me the cause must have been something else, but that it was likely not a continuing issue. As I logged off from the video consultation, I felt summarily dismissed.

However, there were no alternate explanations. Comprehensive testing had ruled out everything else. I faced a familiar, though tortured, choice: keep pushing or let it be. Another nodule biopsy might tell us more, but answers were unlikely, and the current nodules were too small. Aided by the knowledge that there were few remaining dark alleys to explore, I chose to let it be. I buried my lingering doubt for the sake of my sanity.

2024

For years, other health issues cropped up like so many weeds in a garden, so I tended to those. More than anything, however, I focused on simply living my life.

After about six months, cough, shortness of breath, and chest itching returned. For weeks, I chided myself: “You’re just afraid it’s coming back. But it isn’t. There’s nothing wrong.” The doctors had assured me, after all, that whatever unknown process that had happened was over.

The mask of denial slipped one afternoon as I was puffing up the steep hill near our house with my husband and our dog. I couldn’t continue home without stopping to catch my breath. “I think the lung stuff is back,” I told my husband.

My pulmonologist ordered a CT scan, which showed multiple new pulmonary nodules, again with cavitation and ground glass opacities. He referred me to an interventional pulmonologist for possible biopsy.

I met with her via video six weeks later, her first available appointment. Yes, we could try a bronchoscopy-guided biopsy based on the most recent scan, but only if the nodules didn’t change significantly. And we couldn’t schedule the procedure until both her schedule was clear, and my insurance company signed off.

Weeks passed. I coughed through each night, sleep interrupted. I was in suspended animation, the waiting inducing both anxiety and despair. Just treat me, I kept thinking. I just want to feel better. Meanwhile, I knew the insurance company’s labyrinthian menu prompts by heart.

Insurance authorization came through and my procedure was penciled in, with one major caveat: we needed a big enough nodule. Given the changeable nature, there was no guarantee. I got a repeat CT scan. The night before the procedure, the interventional pulmonologist called to tell me that she had identified a viable target to biopsy. We could move forward.

“When will we get the results?” I asked her from the gurney the next morning. “Unless I see something obvious, like fungal hyphae, which is unlikely, a few days to a couple of weeks,” she told me.

A jumble of words and faces swirled a few hours later. “Went… fungal… know.” I failed to arrange the pieces in any comprehensible order amid the slowly declining dose of anesthesia.

Thank goodness she’d give a separate update to my husband over the phone. However, when he arrived to pick me up, he reported similar confusion, albeit for a different reason. His cell reception had been poor during her update. He thought he heard the word “hyphae” but couldn’t be certain.

Connected by video for a follow up two weeks later, she rushed through initial niceties. Then, “I have something I want to show you,” she told us excitedly. She shared her screen, which displayed a photo she had taken

during the biopsy. A black and white image featuring a shape like a curled-up worm appeared. “What you’re seeing is fungal hyphae!” she announced, looking highly pleased. Indeed, the biopsy report indicated “fungal hyphae in a background of abundant necrotic tissue.” It was aspergillus. I sighed, my chair squeaking as I leaned back into it. Knowledge. Proof. “You’ll want to be treated for this. Soon,” she told me.

She shared the results with my ID doctor, who ordered the sample be sent for drug susceptibility testing before he recommended treatment. It shouldn’t be long, I was assured. I waited week after week, coughing, struggling to breathe on exertion, with pain in my ribs, for the results to arrive. The wet cement of waiting surrounded me again, sucking me down. After four weeks, my pulmonologist sent me a brief email message. My sample had been improperly stored and no susceptibility testing results would be forthcoming.

Moving forward without that guidance, my ID doctor finally prescribed me Posaconazole. His skeptical look, tinged with recrimination, transmitted clearly through my computer screen. “People with normal immune systems don’t get this infection,” he told me. “And your immune system is normal.” But the piece of fungal hyphae was both undeniable and identifiable, he then asserted, so it was worth treating. When I asked what type of infection, he told me chronic pulmonary aspergillosis, a semi-invasive type.

I am currently on month three of Posaconazole. The side effects are tolerable, if seemingly random: dry lips and mouth, stomach pain and bloating, and belching. I had forgotten what if felt like to breathe easily, without effort. It’s been at least a decade. My lungs now evoke for me the term “severe clear, ”what airline pilots use to describe unlimited visibility and a crisp blue sky. I cough less frequently. There’s no itching. My irritated ribs have settled. Though I had a severe bout with Covid two weeks after starting Poscaconazole, with high liver enzymes due to Paxlovid and illness, symptoms have again subsided.

Whether this is the end of the story or merely the interim remains to be seen. There is still no formal cause that any of my doctors have identified behind my lung issues. For that reason, in addition to the inherent

uncertainly of with the disease, my prognosis is “unknown,” according to my pulmonologist.

At my most recent appointment with my ID doctor, he said he suspects that I’ll need between three and six months of treatment. “I think you have some immune system issues, that you’re somewhere in between normal and my leukemia patients” he said. Given my decades-long history of infections, that sounded about right. Instead of the previous skepticism, I read in his face an openness and willingness to engage. I thought back to the photo of the strange worm-like structure filling my screen with, paradoxically, something akin to gratitude.

Shannon Cassidy