Vanaf de bodem omhoog schreef op 14 november 2017 17:51:
Even een leuk (nou ja) berichtje in al deze malaise:
www.facebook.com/loukisha.story/posts...Well my friends it is Monday Infusion night. I don’t have a show to talk about, because I had my Ohana hanging out with me. My heart was so happy because my sister-friend D, came by for a visit. D joined right in with us as I prepped for my infusion. I shared about my new prophylactic medication Ruconest with her. She expressed her amazement about how it is made, and cracked a few bunny jokes too. This was a great time of laughing, and revisiting memories of the past. We spoke about how I was in the ICU this time last year. We were so stressed and scared because I had multiple airway and tongue swells. The HAE swells were so aggressive and frequent that I spent 6 ½ weeks in the ICU.
What a huge difference between then and now! I’m grateful for being ICU free for almost a year! The longest I went without being hospitalization due to HAE was 4 months. I’m so happy for the medical advancements, that help keep me out of the hospital. The addition of Ruconest, as well as other therapies, Specialists etc, is such a gift. My hope is you have the HAE therapies, a knowledgeable Specialist, and a support system. With all those important pieces in place it makes living with HAE easier. I would love to hear about your HAE therapies that changed your life. Perhaps it was a Doctor or person that was pivotal in your journey with HAE. If you do please share it, because everyone has a story to tell, don’t be afraid to tell yours.