Two months ago, I woke up at 4:30 a.m. to my husband yelling for me. He was standing over our sink coughing up blood. He had coughed up blood a few years ago and had a lesion on his lungs, but it healed. We thought it was some kind of fluke.
It wasn’t. It was the first sign of a mysterious disease. Over the last two months, doctors have ruled out every normal possibility from tuberculosis to bronchitis to fungal infections. He’s been negative on every single test.
Yet more cavitary lesions (holes, for lack of a better word) continue to form in his lungs. We are now faced with a series of intense tests to definitively see if my husband has a very rare disease known as pulmonary vasculitis. He will have an open lung biopsy performed by a thoracic surgeon in the next couple of weeks along with a MRI, MRA, even more bloodwork. A neurologist has also been brought in to begin seeing if he has the even rarer form of brain vasculitis. Either is a difficult disease to diagnose and treat. The treatment comes with serious risks, including premature death.