Diagnosed; my new journey with Granulomatosis with Polyangiitis

Wednesday, October 16th, Dr. P called me to let me know that my blood tests came back ANCA positive. I have been diagnosed with Granulomatosis with Polyangiitis (GPA), formerly named Wegener’s after a Nazi, so it’s not referred to by that name anymore.

GPA is a rare, potentially life-threatening, auto-immune disease where your small and medium blood vessels become inflamed. It mostly affects the sinuses, ears, lungs, and kidneys, but it can lead to damage to other major organs. The cause is unknown, and while there is currently no cure, treatment can put the disease into remission.

This isn’t the end, only the beginning of a lifelong journey that I pray goes well. I still have to go in for urinalysis as an additional precaution to make sure that all is well with my kidneys, for the most part my blood work looked good. I am still getting the scope done on the 28th to check on my trachea, and I will be getting a biopsy on the 28th as well.

The biopsy is also just a precaution to confirm my diagnosis and to determine how severe the disease is before I being any treatments. Treatment will include among a few things, taking immunosuppressant drugs. Which I am nervous about taking. These drugs suppress or reduce the strength of the body’s immune system. They come with the risk of infection since the immune system is weakened. My body will be less resistant too infections, so if I do get an infection, it will be that much harder to treat.

I’m not sure how I feel about this all yet. I have now been diagnosed with three auto-immune diseases, hashimoto’s, celiac, and Granulomatosis with Polyangiitis.

About 25 percent of patients with auto-immune diseases have a tendency to develop additional auto-immune diseases. I just never really thought I would be in this situation. It’s not ideal, nor what I was hoping for, but it is what it is.

This isn’t the journey we asked for when all this started, but this is the journey we are now on. I am so grateful for the life I do have and that Justin is a part of it. I’m thankful for my family, who are all very supportive and for my friends that have been supportive, understanding, and checking up on me. You are all fantastic people, and I am so thankful that you are in my life.

… and now to remember to just breathe.

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