Hello everyone! I'm struggling to figure out how this forum works so I'm going to try this avenue and see if I reach you. Seriously, you'd think I was 105 years old with this technology but alas, I am only 50.
My journey with Wegener's began in the summer of 2006 while volunteering at a medical mission in Haiti. I was such textbook Wegener's, as far as symptoms, and yet I fought sinus and ear infections for a year after my return to the states. I lost my hearing and all sense of smell and taste. I had very bad 'asthma', couldn't eat and struggled to get to the bathroom. I just kept getting sicker and sicker, but none of the dozen drs I saw could put the pieces together. In June, after an entire year of being sick, my ENT had to perform an emergency mastoidectomy, followed by the other ear a month later. I was honestly mostly dead. I hadn't been out of bed, except for my husband bathing me and taking me to another dr, for months. You'd think I lived in the middle of nowhere, but I was in Los Angeles! Finally, on Saturday, August 11th, 2007 I awoke with chest pains. By the end of the day I was in ICU, on a ventilator , dialysis, and undergoing a platelet pheresis. My platelet count was over 2 million. Two...million! The dr told my husband to go home and prepare our kids because it would take a miracle for me to live through the weekend. Our kids were 16, 12, 10, and 6.
Well, we got our miracle 'cause I'm still here to tell my story. I've had a couple of big relapses and just getting into another so finding this group is timely for me. Like most of you I've tried the whole range of meds, but Rituxan seems to work best for me. My dr is VERY hesitant to give me more Prednisone because 4 years ago I developed AVN, or avascular necrosis, in my hips and I've had both hips replaced. Ummm, yuck.
I am so excited to walk this path with you all beside me. I've already had a warm welcome from one member that brought tears to my eyes as I've walked alone, and afraid, for so long. I hope I can offer hope and encouragement along the way, as well. I am not nearly as educated in all things 'Wegener's' as many of you but look forward to tapping into your wealth of knowledge. So, is there a limit to how many words I can use to introduce myself? I hope not because I have surely exceeded them!
It's nice to meet you all, my fellow Weggies. (haha, I've never used that term before)
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