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
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.
Just like the song by Train, I'm Calling all Angels. It's been a long week and a half for us. Excited with anticipation of dropping prednisone levels again, Eric got his wish. We went down to 5mg! That's pretty close to what your body naturally produces so were almost ready to see if he can begin to start making it on his own and get off prednisone all together.
Just a few days after lowering the prednisone Eric began having severe headaches/migraine and became a little more tired and exhausted easier than usual. So we drank healthier drinks, bundled him up more and hope for the best.
The work week started and the headaches continued. They'd come on strong in the late afternoon and peak highest just about bedtime and would linger all night long off and on, waking Eric every 30-45 minutes. I haven't had nights like that in over 6 months. It was pretty rough.
Eric went to work Tuesday and by the afternoon he was feeling as crappy as the days before. So as we normally do we contacted all his doctors and decided to increase his prednisone by .5 and go back to the usual drop of .5mg every two weeks. Wednesday came and went and the headaches did too. So Thursday I called te family Scott and we were able to squeeze in an afternoon appointment.
Typically most people wouldn't fret over he aches and tiredness, I mean seriously, who can't use a little extra sleep every now and then?
While we were there we took some blood work again to check Eric's inflammatory markers and his cell counts as well as some vitamin levels. He also got a B12 shot which might be a regular regiment after we consult his 4 other main doctors. She put him on Bactrim and Flonase in hopes that this might just be the start of a 'simple' ear infection or sinus infection and nothing worse. The thing is- the simple anything to the average healthy person can become easily more complicated and detrimental to someone like Eric because of all the immunosuppressant drugs and life threatening diseases he has.
So as Eric finally drifts off for who knows how long, I'm calling all ANGELS and PRAYER WARRIORS to surround him with their love and pray for this to be nothing more than a simple cold that passes soon and that the Stills Dragan lay dormant. For more information on Still's Disease visit: www.StillsDisease.org
A lot of good news today. All of my bad numbers are lowering. Still not where they need to be but getting there. The X-ray was good. Catscan was good no blood clots and clean strong lungs not perfect but a huge change from no lungs and a machine and a collapsed lung. Spinal tap returned with no problems in the brain which was a concern with my headaches and soreness. So it's just working out every day. Thanks I love reading the comments and the visitors it really helps me get better faster. Miss you all love you all and awaiting my homemade spaghetti ( Ty Lois). And my fresh philly pretzels (ty steve jason erik) and my piece of chiken steak (ty ruth and marty) thanks everyone for all the MUCH NEEDED support. You guys all had a huge part of me surviving and healing.
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