I knew I was in trouble on August 21, 2018, when I was on a business trip. Lying in a hotel bed, I felt my body boiling hot. I had felt a chest pain a day earlier and just began a mild cough. When I got home the next day in the late afternoon, my temperature was 102. All symptoms suggested pneumonia.
I didn’t want to go to an emergency service in the evening. I made an immediate appointment on Doctor on Demand, a telemedicine service. A doctor went through all my symptoms through a video call and shared her diagnosis of pneumonia. She prescribed azithromycin, a common frontline antibiotic treatment for pneumonia. My wife rushed to a pharmacy to get the prescription right before it was closed for the evening.
The antibiotic dropped my temperature to 100. After the 5-day course of azithromycin, I went to see my family doctor. He took a chest x-ray, which showed a 3 by 6 centimeters mass in my left lung. The family doctor put me on another antibiotic, levofloxacin, and told me it would cover a broader spectrum of bacteria.
My fever lingered between 100 and 101 through these days. I started to lose appetite and weight. Fever should be gone already under a right antibiotic. Felt I needed a second opinion, I started to look for an appointment with a pulmonary doctor or lung specialist. I didn’t expect this to be a challenging endeavor. I had not used the healthcare systems for a long time beyond occasional visits with my family doctor. When I called for an appointment, Mayo clinic would see a new patient in November and the University of Minnesota Fairview Hospital told me to wait till October. Eventually, I got an appointment on Sep 5 with a pulmonary doctor at the St. John’s, a hospital in a neighboring suburb.
The pulmonary doctor felt the levofloxacin should have the infection under control, and she was puzzled by the lingering fevers. She ordered a CT scan on the same day to get more information. I got a call from the doctor on the same evening and was not prepared for what I heard.
She told me that the CT exam found a 7 by 7 by 5 centimeters mass along with several small masses in my left lung that were suspected for malignancy, or lung cancer. This would not exclude the possibility of lung infection, but the malignancy was the main concern. She suggested a CT-guided needle biopsy for a more definitive diagnosis.
This news was not easy to digest. The pulmonary doctor stayed late and sent me a copy of the CT report. I shared it with a few close doctor friends and my sister. The implication was serious. My sister, working for a large pharmaceutical company in New York, started to look for connections with the best cancer institutes in New York City. One doctor friend advised me to focus on getting a right diagnosis first and not worrying about the possible outcome. My wife and I hugged and reminded each other not to worry about the lung cancer just yet.
One problem we faced was where to get care. I might need care from oncologist, interventional pulmonologist and infectious disease specialists. I needed to go to a hospital, where all cares could be coordinated. The doctor at St. John’s was nice and responsible, but her hospital was small and unknown to us. Finally, we decided to go to the Abbott Northwest Hospital. It’s a larger hospital. A close friend worked there. She helped get an appointment on Sep 11 with a thoracic surgeon, who specialized in lung cancer.
A second problem was more complex. Lung cancer was serious, but the chance I had it was also small. I did not have its major risk factor of being a primary smoker or exposure to second-hand smoke. In addition, the mass grew from 3 by 6 centimeters to a much larger size from Aug 29 to Sep 5 – too fast for a tumor to grow. The needle biopsy recommended by the pulmonary doctor had a 20% chance to collapse the lung, or pneumothorax, which would require hospitalization. The problem was how to minimize the complication rate while getting a right diagnosis.
The fever still lingered around 100 to 101. After the 10-day course of levofloxacin, I went back to the family doctor. This time, he prescribed another antibiotic called doxycycline. This became an empirical approach of trying different antibiotics and hoping to catch the bug.
The thoracic surgeon ordered a PET scan before my appointment to get more information. The PET scan confirmed the findings on the CT report. The thoracic surgeon recommended a biopsy procedure via bronchoscopy, a procedure that causes less complication rate than a needle biopsy and has the flexibility to get more samples. The biopsy was scheduled on Sep 17.
After seeing the thoracic surgeon, I saw an infectious disease doctor at the same hospital, who prescribed another antibiotic, amoxicillin. It covered a different spectrum of bacteria. I was happy to try it after the doctor suggested that I might feel much better after 2 to 3 days. We scheduled another appointment following the biopsy. The relief, however, didn’t come after three days.
An interventional pulmonologist conducted the biopsy under general anesthesia on Sep 17. After asking the nurse to adjust my pillow in the OR, the next thing I remembered was waking up in the recovery room with my wife on my side.
The biopsy report came the next day. If the CT report on Sep 5 was “life threatening”, this report was indeed “life giving”. It confirmed that there was no malignancy in the biopsy sample. Instead, the doctor found large yeast forms with the shape of blastomycoses. In another word, I had a fungal lung infection. This explained why all those antibiotics had not worked – I did not have bacterial pneumonia.
I was feeling good about finally getting a right diagnosis until I started to read about fungal lung infection and blastomycosis. Fungal lung infection was a rare condition and misdiagnosis was common. In a report from Southern Saskatchewan Canada between 2000 – 2015, a total of 15 cases of blastomycosis were confirmed by lab report. Initial misdiagnosis occurred in nine cases and six of them died. The main cause of death was acute respiratory distress syndrome (ARDS) after the majority of lung infiltrated by the fungal infection.
The infectious disease doctor put me at ease after reading my biopsy report. There was an effective antifungal treatment for blastomycosis, which he started it with me right away on Sep 20. He also told me although my lung function was compromised, it was still in good shape with little risk for ARDS.
After three days of antifungal treatment, my fever receded for the first time after a whole month. It was such a relief. Finally, I had the right diagnosis and treatment. It took a whole month, but it was not too late.
Throughout my career, I worked with doctors on new treatments for patients. This was a humble experience navigating the healthcare system that I had thought I knew well but really didn’t as a patient. I was lucky to have close doctor friends, who kept me on the right track and avoided additional delays. My family, friends, and colleagues kept me focused on my health. They reminded me that I was in their thoughts and prayers when I faced uncertainties. I was happy to tell them finally I was on the mend.
I had an excellent insurance plan provided by my employer. It provided my access to specialists, diagnoses, and treatments with little out of pocket costs. I was grateful for getting all the care I needed for granted and recognized it as a privilege.
Finally, I was wondering where on earth I got the fungal infection?
The Great Lakes is an endemic area for blastomycosis. The infectious disease doctor asked me about everything happening on my two trips in the boundary waters areas in the early summer this year, such as whether I broke any beaver dam. The last case that he diagnosed came from a group of four guys took woods from a beaver dam and burned them while camping and canoeing in the boundary waters. All four contracted fungal lung infection.
I became nervous with the line of questioning, worrying about not going to the boundary waters ever again. After thinking about the trips for a few days, I remembered one event. The blastomycosis lives in moist soil, decomposing wood, and leaves. When we were in boundary waters in June this year, we were mostly fishing and canoeing in its beautiful lakes. On one day, after a light rain, my friend and I grated the gravel and dirt road leading to his cabin. We had a lot of fun of dragging a scraper blade up and down the road a dozen time. This would have the best chance to expose me to the fungus than anything else we did during the trip.
It was a relief to know, after surviving this fungal lung infection, I could still enjoy the boundary waters, fishing, and canoeing. We just need to leave the gravel road, beaver dam and its fungus alone.
Postscript
The Minnesota Department of Health contacted me in December to collect information on my exposure to blastomycosis. They have a good summary of on the overall exposure information in the state of Minnesota: http://www.health.state.mn.us/divs/idepc/diseases/blastomycosis/statistics.html
