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.
Swimming the Depths 
Thank you again for letting us use such a moving and convicting essay.
You have my prayers for your husband, Phil, and your family.
Hi, Constance! I have a friend who has had pulmonary vasculitis for at least 3 yrs. It took the team of drs working with her to pin it down to vasculitis. It affects her lungs (she has been using a portable programmable oxygen machine) as well as her kidneys. Karen brings the oxygen everywhere. Recently, she has been able to go a little longer without tirning on the machine. She comes to our church”s Praise & Worship and has been able to sing more as well. She has been given Rituxan (also known as Rituximab) on trial basis, which has helped her quite a bit. Karen used to be cold all the time. She feels warmer. The color of skin looks better in face, hands. Karen has been trying to wualify for acceptance in lung transplant list.
Perhaps the above medication can help your husband. I will your family in prayer.
I havebeen a widow since end of June 2016. I certainly understand your thoughts & concerns.
Thanks, Joanne! My husband has been through his first round of Rituxan. So far he’s not in remission, but we are hoping it will happen soon. We’ve gotten the lung damage to slow down right now, so that is a huge improvement.
I am so glad lung disease iss slowing down, Constance. I will keep him in prayer, asking for the remission ofbthe lung disease. You may want to ask for St. Stanislaus Papcynski intercession. One of the miracles through his intercession was for someone who had pulmonary vasculitis just after he was beatified. He is the Founder of the Marian priests. You may want to read up on him. There are novenas asking for his intercession.
God Bless You. Please keep me posted. I will ask for prayer in proxy at our Soaking Prayer at St. Joseph Parish in Wakefield, MA!