After 12 years of unanswered questions, countless infections, and worsening lung function, Kathryn finally found clarity with a diagnosis of Common Variable Immune Deficiency (CVID) in 2017. It wasn’t until her doctor tried IVIG therapy that everything changed. We’re proud of her courage and determination!
Please share a few sentences about your overall story living with Primary Immunodeficiency.
It took about 12 years, multiple pneumonias, sinus infections, and ever-worsening lungs to discover I was heterozygous for Alpha-1 Antitrypsin; however, that did nothing to improve my situation. The number of specialists, MRIs, and testing at major medical institutions in Boston led two teams (one at Brigham & Women's, one at Beth Israel-Deaconess) to consider bronchial thermoplasty (lasering the insides of my lungs) until my local ID doctor decided to try IVIG in my antibiotic PICC line. Miraculous! My lungs moved from 3x/day vibration vest, high dosage inhalers and daily nebulizing to NO inhalers, nothing! My immune system responded to only 3 of 23 serotypes in the pneumococcal vaccines and I have low Subclasses 3-4. Sinus issues still plague me despite my every 3-week IVIG infusions, but overall, I am much better than I was before beginning IVIG.
How and when were you diagnosed? Which specific PI disease do you have?
September 2017; Common Variable immune Deficiency (CVID).
How has treatment impacted your life? How did you decide this was the correct treatment for you?
Miraculous response to IVIG. My lungs went from sounding like a washing machine with years of prednisone use to keep me breathing to using nothing at all. I'm a fitness instructor and teach classes with no ill effects.
Do you share your story with others online? If so, tell us what made you decide to do so.
Not until now. I struggled for so very long--if my story can help someone get an earlier diagnosis, good.