I was a bundle of nervous energy as I sat in the waiting room of my doctor’s office. I’d had an introductory appointment with him already, during which he’d assured me he was determined to solve my case. However, after waiting six long years since my first attack for a diagnosis, I remained skeptical. That is, until my doctor called me back that same day to schedule an additional appointment—he had found something crucial in my bloodwork: answers.
After what felt like an eternity, my father and I were called back into the room. The nurse had a kind smile and spoke calmly as she took my vitals and temperature, assuring me the doctor would be with me soon.
After 10 minutes that felt like a decade, my doctor stepped in the room and told us he was so glad to have news for us today. My eyes moved to my father, who was on the edge of his seat. We had started this journey together, and here he was for what felt like the start of my new life.
“Katie, you have hereditary angioedema.”
My breath caught. A million questions stormed through my mind. What is hereditary angioedema, and why have I never heard of this? Is there treatment? Will I be okay? Simultaneously, I felt a wave of emotions:
I pulled myself from my haze to listen to my doctor explain HAE to me. He was patient, and understood the emotional aspect of the diagnosis. He explained the illness thoroughly, and was excited to tell us that there were treatments available.
Before we left, the doctor gave me reading materials and websites to learn more about HAE. He referred me to the doctor I see today, an expert in HAE who would continue my care. As we moved to leave, my father and I could not seem to stop saying “Thank you.” However, there were no words, and there are still no words to this day, to express my appreciation for what that doctor did for me. He took the time to go through my files, and he didn’t take “I don’t know” for an answer.
Walking out of the office, I left everything in the past behind. I had HAE, but I also had hope, answers, treatment options, and a plan for the future. I have never looked back.
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