I've been reading all of your stories and experiences for over a year now starting when I was in the hospital June 2012 when I was diagnosed myself. I wanted to say first off, you all are awesome. So many smart, supportive people post here it and has really helped me get through the craziness of it all.
I was diagnosed in June 2012 when I woke up unable to breathe coughing up lots of blood. Before that morning I had no real signs of the disease that I picked up on until I did a bit of research. As a child I had lots of unexplained severe joint pain that would come and go, high blood pressure and severe nosebleeds. I was first taken to Shady Grove Hospital in Rockville, Maryland and after 5 days of them attempting to treat me for pneumonia I became too critical, was put on a ventilator and into a medical propofol coma. I was then helicoptered to George Washington Univ. Hospital in Washington DC.
After a few hours at GW they had concluded that this definitely was not pneumonia. At the time Wegeners was the best guess ( And still is ). I most definitely would not have made it another day had it not been for the staff at GWUH. The immediately started me on pulse IV steroids, IV cytoxan, plasmapherisis, 3 blood transfusions and 11 days later I woke up from my propo-coma. Two weeks later I had a relapse of the lung hemorrhage and we repeated everything once more and another three weeks later I was released on higher doses of Cytoxan (225mg) and Prednisone (120mg/Day). At the time I had no involvement in my kidneys and my lungs were too critical both times to preform a biopsy, They did attempt a nasal biopsy but only "nonspecific inflammation" was shown.
Around thanksgiving 2012 I did Rituximab infusions and was mostly symptom free until a few months ago.
Almost two years later... I'm 22 now and getting ready to get back to college hopefully. Two months ago the doctors noticed small amounts of blood in my urine. We had an ultrasound done and nothing glaring showed up so I'll be seeing a Nephrologist soon to figure out exactly what is going on. The Prednisone caused very severe Avascular Necrosis (AVN) in both my knee's, ankles, hips as well as my right wrist and elbow (Who knows where else it is.. Seems as if it hit every bone in my body.) So I'm really hoping to avoid any more Prednisone because it will most certainly result in knee replacements at the very least.
And that's me! I've really found alot of support in this forum just by reading other's stories. Hopefully mine can help someone else. Being young with Wegener's & AVN is no worse medically but it definitely comes with its own unique set of challenges to overcome as I'm sure is the same for any age bracket.
Thanks for reading,
Alex
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