Journal entry by Leah Molden Mertz —
In late October I began coughing up blood. I saw General practitioners who diagnosed me with a sinus infection and then acute bronchitis. The meds didn’t help the coughing up blood, so I went in and demanded tests. The tests showed I had a possible embolism so they sent me to the ER for a cat scan. The cat scan showed blood in my bronchiole sacs which led to a referral to the pulmonologist. The pulmonologist ordered lots of labs and did a bronchoscopy with lavage and lung biopsy. On the way home from the hospital, after the biopsy, the pulmonologist called and said he was pretty sure I have GPA (Granulomatosis with polyangiitis) also known as Wegeners and Vasculitis. Essentially I have an autoimmune disease that is attacking my blood vessels.
MAYBE
After a trip to the Rheumatologist (Vasculitis is a cousin to arthritis ) I learned that I’m a great medical mystery. Apparently my symptoms and test results are not meeting all the criteria, however I had been on meds by the time I demanded tests. Without certain test results it’s hard to establish which autoimmune disease it is. We don’t have all the results back from the biopsy and he wanted more tests. He is concerned about my high blood pressure because that can be a symptom of GPA in the kidneys, but it’s so rare there are no definite criteria. He ordered twelve more vials of blood and is going to work on my insurance. He would like for me to have an open lung biopsy and a kidney biopsy, but needs test results to come back to get it approved with insurance. Basically no two people are the same with autoimmune diseases like this, so he has to put the puzzle pieces together to figure it out. He has a plan if it’s GPA of weekly all day infusions, but won’t start that until he knows more. Until then I’m on lots of prednisone and acid reflux meds and an antibiotic to prevent an infection because the steroid suppresses my immune system, also.
Tomorrow I go see the surgeon for whatever results he has and then Thursday I go back to the pulmonologist. I’m more confident now than I’ve been, but the hurry up and wait game is not fun at all. Prayers always appreciated, I know God’s got this!
Life is an adventure, welcome to mine!
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