A common cold to heart failure

In early March 2016, I caught another bad cold and I could hardly breathe whenever I walked. A few weeks later, my cold worsened; any attempt to lie down resulted in an endless fit of violent coughing. After four sleepless nights, I decided it was time to go to a Minute Clinic.

The staff there checked my blood oxygen level, which was substantially below normal, and they suggested that I go to an Urgent Care Clinic. The medical personnel there also checked my oxygen level and immediately offered to call an ambulance -- I opted to drive to the hospital myself.

At the local hospital, I found that the reason for my cough was “right-sided heart failure.” The general practitioner who treated me explained that my lungs were ¾ filled with fluids, which caused strain on my heart. I was prescribed Furosemide and Carvedilol, medications frequently prescribed for heart failure. Over the course of the next three days, the doctors tried to understand what caused the heart failure. After undergoing a variety of tests, including another RA and lupus test that came up negative, they determined I had pulmonary artery hypertension (PAH).

After the hospitalization, I went to a cardiologist who specialized in PAH, and he performed both left and right heart catheterizations. The latter established my pulmonary artery pressure at about 78 mmHg, which was significantly higher than normal. He also insisted on two sleep studies, each based on only one hour of sleep! In the end, the cardiologist diagnosed me with sleep apnea and idiopathic pulmonary fibrosis.

At the same time, I saw a pulmonologist. He ordered a variety of tests, including a CAT scan to determine the flow of blood and air in my lungs. When I went to get my scan done, the technician grew visibly distressed as the images developed; she instructed me to call my doctor once I got home to see if I should be hospitalized. The pulmonologist later determined I had interstitial lung disease and possibly pneumonitis (inflamed lungs). The pulmonologist’s colleague, a rheumatologist, ordered even more tests (including my fourth RA and lupus test) and said he thought I had sarcoidosis.

At this stage in my journey, I had half a dozen diagnoses with no clear answer as to which one was correct. To get a definitive answer as to what was wrong with me, the pulmonologist and rheumatologist suggested that I undergo a needle biopsy. But a few weeks later, they changed their minds and decided I should rather get an open lung biopsy; they assured me that they had a treatment plan, which would not be affected by the biopsy findings. Initially my cardiologist balked at the biopsy, but later agreed when he was assured that I would be hospitalized in the ICU for a week.

When I met with the thoracic surgeon who would be performing my biopsy, he contradicted everything my other doctors had told me. I had already set up an appointment at the Mayo Clinic in Rochester, so I decided to forego the biopsy.

Next: Part 2, Finally a Diagnosis