My husband’s lung biopsy results came in late yesterday afternoon. It is as we feared. He has a rare form of pulmonary vasculitis. We knew it in our guts already, but my first response was “dammit” and a lot of tears. The disease is Wegener’s-Granulomatosis with Polyangiitis. It is an auto-immune disease that attacks the blood vessels in the sinuses, lungs, throat, and kidneys. It also comes with a lot of other symptoms.
What’s next? Phil’s Pulmonologist is handing him off to a Rheumatologist to continue testing and begin treatment. The next step is to see if his kidneys are implicated at this point. His blood work is normal, but further kidney testing needs to be done. We will also have to notify the Neurologist of the positive diagnosis to see if we need to continue with further testing for brain vascultitis since the MRI and MRA are not considered definitive in a diagnosis of brain vasculitis. They are the starting point.
Our goal now is to get this disease into remission as quickly as possible since the rapid rate of lung damage is stifling and deeply concerning. The prednisone seems to have slowed it down, but Phil is far from remission. He has a whole host of other symptoms which is why we already knew it was Wegener’s.
The treatments for this disease do not cure it and they come with a wide range of side effects including some pretty nasty ones. They are similar to what my dad has been on over the years for RA. They can be anything from chemo to immuno suppression drugs to platelet transfusions. If we cannot get it into remission, then we want to at least be able to treat the symptoms and slow down the progression of the disease.
Our lives have changed dramatically and will never be the same. We now have to learn how to live with this incredibly difficult Cross. We continue to hope for the best and plan for the worst. Thank you to everyone who has already offered to help us. We will definitely need help as we walk this new road Our Lord has given to us. Please continue to pray for us and Phil’s medical team. Rare disease are tough, but we will continue to trust that God will give Phil the right doctors and that even if the worst happens, God will lead us on the path to holiness and give us the strength to endure and persevere. And, yes, this sucks, but there’s always hope.
In light of this diagnosis, we will be pulling out of our adoption process until we can get Phil into remission. This was an extremely painful decision, but we just don’t have the money and things are very uncertain for us. Thank you to everyone who helped with our fundraiser. All of the donations went to our home-study.