What a wonderful support group! My name is Trena, I live in Phoenix Arizona, I am a single mother with 2 kids and I was newly diagnosed in March 2015 (at the age of 41) with Wegener's Disease. I was struggling with sinus issues for a month and a half and I had just thought that I had terrible allergy issues. I was given 3 different prescriptions from my primary doctor and 2 from my ENT and still no relief. It wasn't till my left foot and left had awful tingles and a shooting pain one evening that I knew I had to go immediately to the hospital. The doctors were wonderful and after a week of many test a lung biopsy confirmed that I had Wegener's Disease with growths in my lungs, kidney damage, sinus issues, hearing loss and neuropathy. I started my Chemotherapy on April 1st in a pill form that I took daily at home. Due the my lowered immune system I unfortunately was admitted to ICU July 5th with PCP Pneumonia. After a kidney biopsy the doctors informed me that I was now in remission and I had no active Wegener's issues (the growths in my lungs were gone and I do have some kidney damage, yet nothing too bad). I was pleasantly surprised since I was where the doctors wanted me to be after 3 months of chemo vs 6 months of chemo. Due to an issue with medication not agreeing with me I was admitted back into ICU for a week at the end of July which was caught early. I was on oxygen full time due to the pneumonia for a few months and now I only need oxygen in the evenings while I sleep for about 3 more months.
This has been quite an amazing journey for my family and I. I was blessed with amazingly supportive parents to help out with my 8 year old son and 10 year old daughter. My kids are my strength and I discussed every part of this journey with them so that they were not scared (ex: chemo is a medication to help mommy get better and not a scary word). My kids would visit me in the hospital and have to wear a gown, mask and gloves, yet we were all together snuggling in my bed on the journey together. I am also extremely blessed with amazing doctors which work well as a team. I go in for weekly blood tests near my home, the results are sent to all my doctors the next day and they contact me if there is a problem (which happened this past July when I was instructed to go to ICU immediately). I see my doctors every month and I am just now starting to embrace my new "normal" life and the issues I need to be aware of. I did lost most all my hair due to the chemo, yet it has already started to grow back and I'm just thankful....thankful to be here today with my kids! I also had a autoimmune disease 21 years ago (ITP where I had a month of chemo and eventually my spleen removed). Just like Wegener's, the doctors don't know how I got ITP.
I look forward to talking with several of you and continually learning more our this disease and the journey ahead that we all deal with. I can't wait to read through all these threads and soak in all the information I can get!
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