Eric Majusiak's Journey with HLH - Hemophagocytic Lymphohistiocytosis, a rare and potentially fatal blood disorder of the immune system. Visit www.EricsJourney.org for more information
Showing posts with label Hemophagocytic Lymphohistiocytosis. Show all posts
Showing posts with label Hemophagocytic Lymphohistiocytosis. Show all posts
Today in 2012 I was finally starting to have some memories. I didn't really know what day it was and everything seemed so confusing. People just kept telling me how lucky I am to be alive and how i'm a miracle at Temple [Hospital]. I was told it was April 6 and knew it was my older brother Jay's birthday. A couple days before my pulmonary doc, Dr. Desai told me I should start a video journal. It really wasn't something I ever thought of doing and at that time I never thought i'd even share them with anyone. As time went on, I began making more more. Often times forgetting until late at night or the next morning. They wrote the day on the board, but I couldn't really see it from the bed. I never wore my glasses because of the stupid feeding tube. I had been ok'd to talk after being taken off ventilator support, but I wasn't allowed to eat food or drink anything until i passed the swallow tests to make sure everything was going into my stomach and not into my air way.
I hope to help people and their families not experience some of the things I did and I hope that sharing these will help raise awareness for this disease and help others who become diagnosed.
